Topic: Dd's recent Ab test was positive...gastric emptying & echo cardio ordered
hshbmom
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posted
Hi Lymies,
My dd has been having a time lately. They cleaned her GI tract out last week, but feels the same problem is reoccurring. She has abdominal pain again. The pediatric GI is going to order Senecote for her for a couple of weeks, but no longer so she doesn't get addicted to it.
She had a follow-up with her FP today...the Lyme antibody test was positive, but a Western blot by Quest was negative. She's got full-blown Lyme symptoms now. I think it's related to the recent treatment of H. pylori.
She's taking flagyl 250 mg 3 times a day and amoxicillin 500 mg 3 times a day for H. pylori. Dd said these are the same symptoms she had when she first developed the rash. She's having pain in her neck, back, and hips.
She's also having brain problems such as an inability to concentrate, word substitution, declined spelling ability, and irritability. She's absolutely miserable & doesn't want to go to school. She looks bad too.
I'm thrilled the antibody test was positive. It was by Quest. This should help get treatment for her. The FP was puzzled the Western Blot test was negative & wants us to consult an ID.
The FP thinks she has a mitral valve prolapse, migraines, and irritable bowel syndrome...he said they commonly occur together, but I don't know why.
The FP ordered a nuclear medicine gastric emptying test and a dobutamine stress echo cardiogram. I guess he's looking for Lyme heart problems and ?.
The FP wants to send dd to a local ID (duck). I hate to waste my time with him. I'd rather have the FP consult my LLMD, and correctly treat my dd right here, right now.
Do you think these other tests will be useful? Have any of you had any of these tests? Are they uncomfortable, painful or nasty?
[ 30. May 2008, 06:38 PM: Message edited by: hshbmom ]
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savebabe
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Regarding the Dobutamine stress echo...Is she strong enough to walk on a treadmill? If so, she could do a treadmill stress echo. I have performed both of these at my job. Dobutamine is given IV in high doses that causes the heart to speed up and pump very heard. Where I work, we only give this medication as a last resort to people who are completely unable to walk on a treadmill. The same outcome can be obtained by walking on a treadmill to speed the heart up. Then she wouldn't need an IV or Dobutamine.
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hshbmom
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Hi savebabe, thanks for the PM. I was just curious why the FP wants a gastric emptying when her problem seems to be in her intestines. Constipation isn't a stomach problem.
Hi pattilynn, my dd is strong enough to walk for a stress test. I have no idea why the FP wants to give her an IV drug when it would be so much easier naturally, unless he doesn't want to push her physicially. She has aching hips & knee weakness, but think she could do this test without the drug. I prefer to do without drugs unless absolutely necessary. I'll ask.
Are these good tests to evaluate Lyme damage?
Nancy
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lymie tony z
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Hey their, Your DD HAS lyme disease. The mitral valve prolapse is a common symptom of lyme disease...I have it and so do most lymies. It's a nerve thing cuz that's what happens when lyme is in the brain and Central nervous system.
The Cognitive problems she's presenting are CLASSIC neuroborreliosis symptoms.
Quest lab TOTALLY stinks...they don't have the methodology to come up with a positive for BB...so do not waste your time.
I KNOW this as a FACT...because when I worked for Labcorp they were using IGENEX for their lyme tests...and with the same blood draw I sent my blood to Quest AND thru labcorp and Quest came back negative and IGENEX came back positive IGG AND IGM... This was done a second time for me a few years later and my blood was sent to Quest AND STONEYBROOK...guess what....Quest was negative and Stoneybrook was positive again IGG AND IGM.
The gastric problems your DD is experiencing is also nerve related... It's a form of bells palsey...only this bells palsey affects the stomach... My gastric emptying test showed NO evidence of a problem...however I informed the gastro duck at the time that my bloating and gastric problems only occurr in the evenings...when I experience most of my sundowner like lyme/ms symptoms.
He of course told me I was nuts...."if you have gastric emptying problems you have them all the time or not at all"...bullfeathers...
The gastro won't find anything wrong cuz they will either do the test in the morning when symptoms are at their weakest...or when they will eventually do an endoscopy...they won't swab for microbes...or test for the correct causative pathogens...
Your DD should NOT get any drugs to induce rapid heartbeat to simulate stress on the heart...in my opinion this could be deadly for her...
A stress test is unnecessary anyway....an echo of her heart will show a mitral valve prolapse just laying there.
A stress test...which I have had done will show nothing new and the doctors will tell you her heart problems are stress related. This will throw them off track from what she really needs.
NOT something you need right now.
What you need is IV antibiotics...your DD sounds very much like she has a brain and CNS infection by BB and it MUST be addressed.
The flagyl and ammoxy treatment for H-pylori should actually be ammoxy and Biaxin(clarithromycin) and prevacid....this is called a PREVPAC.... the Doctor you're seeing SHOULD know this.... I had the h-pylori treatment YEARS ago...I'm asymmtomatic for h-pylori...but because h-pylori and lyme are cross refferenced in tests... and your DD OBVIOUSLY has lyme...she will still test positive for both....
Please Nancy...GIVE THIS EMAIL TO YOUR DOCTOR SO WE CAN FIX THIS CHILD>>>>>> or at least lessen her symptoms...she has an active brain and cns infection that is getting worse......
ZMAN
[ 26. September 2006, 06:49 PM: Message edited by: lymie tony z ]
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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treepatrol
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-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
The stress echo will show how the heart valves are functioning at rest and then how they are with stress. The echo (untrasound) is done before then immediately after exercise/Dobutamine to see if increased stress causes worsening of the prolapse or valve/s leaking etc...The test also shows the function of the left ventricle which is the main pump of the heart. The test will show the above results but won't specify anything about lyme. I would think and IV and Dobutamine would be very traumatizing to a teenager or child. Just my opinion.
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lymie tony z
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Patti lynne
What it won't show is the affect the infection is having on her brain interrupting the signals thru her nervous system which is causing the prolapse.
That's what I meant by not showing the ducks anything new... Not that the tests won't show anything...I know what they show...I've had them and a cardial catherazation and the ducks found NO reason for me to have the mitral valve prolapse which almost caused my heart to fail....
It was electrical...which also did'nt show up on a holter monitor or EKG's...
These duckheads are wasting time and a little girls chances are lessening with every passing day.
I hope I'm wrong...but unless I miss my guess...she'll start exhibiting paralysis in her extremities...stiff neck;arm or leg muscle failure;facial bells palsey; and that's the less serious paralysis'... If the bug decides to shut down a major organ...well....you know what that means.
zman
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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northstar
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The FP wants this test , and wants that test. Yet, you have objective test results + numerous serious symptoms.
Could you just "walk", and go to your llmd for appropriate treatment? Just a thought.
Unless there is some kind of friction with FP, but then perhaps a new FP would be advisable. Perhaps akward/difficult to do in a small town, though.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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I'm thrilled the antibody test was positive. It was by Quest. This should help get treatment for her. The FP was puzzled the Western Blot test was negative & wants us to consult an ID.
The FP thinks she has a mitral valve prolapse, migraines, and irritable bowel syndrome...he said they commonly occur together, but I don't know why.
Never consult an ID for Lyme disease unless you want to waste money and be insulted!!
Mitral valve prolapse, migraines, and IBS are COMMON with Lyme! VERY!!!
She is MISERABLE because of the flagyl. I'd bet my booties on it! That stuff will kill the lyme spirochetes like crazy!
I'm not suggesting that she go off of it, but I am saying it's very effective in killing off the lyme in cyst form.
It messes with your brain, BIGTIME! That was the one drug I barely survived taking. UGH!!
Please take her to an LLMD as fast as you can.
Tell her FP that the reason the WB by Quest came back negative is THAT QUEST IS A LOUSY LAB FOR LYME!!!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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hshbmom
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Hi you guys,
My LLMD won't treat my dd or advise another MD how to treat her....unless she's CDC positive...thanks to the restrictions of the foolish puppets on the state medical board. My new FP is moderately Lyme friendly, but not Lyme literate. I think he might treat my dd if he'd get some wise counsel from a LLMD.
I just have to find another LLMD who'll treat my dd. I've left numerous messages at the other LLMD that's fairly close, but they don't return phone calls or other messages.
My dd is not having stomach problems, only intestinal problems at this point. I don't know why the FP wants a gastric emptying test unless he thinks it might be caused by H. pylori. She has pain high in her abdomen, under her ribs, in the middle, so maybe that's why he wants to check out her stomach.
I wonder if H. pylori could be responsible for dd's stomach aches this past year. She had headaches, fever, stomach aches, and got bright red cheeks.
My dd complained yesterday that she felt like she was getting paralyzed. She walked around the house using a cane. She's got the 'old lady shuffle' due to achiness in her hips. She said her knees feel weak & tingly as if she was being drugged...like it feels when you wake up from anesthesia.
The FP thinks she has a mitral valve prolapse, heart flutters, migraines, and irritable bowel syndrome....which also causes the seizure-like movement disorder. Now she's got this gut problem, which appears like it could be paralysis of the gut. No one has determined the cause of all these problems. They look at me like I have 3 eye-balls when I tell them Lyme might cause all these symptoms.
tincup....Thank you for the information about vagal nerve paralysis of the gut...."Bell's palsy of the gut" It sounds exactly like what my dd is experiencing....especially ileus & putty-like poop. The pediatric GI could find no cause for the constipation/obstruction.
LymieTonyZ....what do you mean that Lyme and H. pylori are cross-referenced? Do you mean they cross react? Do you have a reference that supports this statement? I've been trying to find this information. So, is H. pylori actually present? Does it show up because it's opportunistic during a Lyme infection? Does Lyme-induced immunosupression allow this H. pylori to proliferate? Can you explain this better?
My dd mentioned yesterday that greasy foods seem to trigger abdominal pain, so maybe she also has gallbladder involvement.
She tested negative for co-infections. I thought she might have bartonella, because of her frequent red cheeks, and stretch marks on her abdomen. She has grown quite a lot and put on weight recently, so the stretch marks could be due to rapid growth.
I'm monitoring her temperature...she looks like she has a raging fever, red cheeks, has chills, and is miserable, but her temperature only ranges from 98.4 to 99.2 degrees at these times. I suspect she has a normally low body temperature, as I've read is common in some people with Lyme disease. This could be a real fever....for someone with a lower than normal body temperature. It's nice to have this documented.
I spoke to the attendance secretary, principal & the school nurse today. They realize Lyme disease treatment involves long term antibiotics, with malaise & fatique as complicating symptoms. They seemed to be understanding. This is her 3rd week out of school. I hate that she's missing school. She hates it too. She's a straight A student & hates to get behind. It's one thing to make up homework, but I can't duplicate her classroom discussions. She feels so bad; she's only finished a small portion of her make-up work. If her back & neck & hips aren't hurting, her belly is hurting. It seems she acts normal only a few hours out of the day.
Nancy
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Truthfinder
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Nancy,
Has your daughter's doc recommended anything simple, like a little extra fiber for your daughter?
This can make a huge difference when there is ``slow transit'' in the intestines. Literally, it helps peristalsis by giving the intestines something to grab onto. It also helps the intestines to stay ``inflated'', because for some people, the intestines can literally prolapse or collapse if there is insufficient bulk throughout the intestines. It also helps to hold water in the intestines.
Teenagers generally don't have terrific diets, and they want to eat what tastes good. Saturated fats and hydrogenated fats plus some nice white flour products can form a solid paste in the intestines, which can turn to concrete if transit is slow as the water is slowly absorbed out of the intestine. Some fiber could really help counteract this problem.
I get along well with the original, flavored, textured Metamucil. But there are many products out there now. Just be sure that sufficient water is taken or the fiber can contribute to the problem. In fact, sufficient water intake is crucial to most people who have constipation issues.
Having ended up in the ER twice with an impacted bowel, and having to drink the PEG solution to get cleaned out, I am very familiar with what your daughter is experiencing.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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arg82
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I've just skimmed over the responses in this thread but wanted to mention a few things.
I've had two gastric emptying studies done and I've been diagnosed with gastroparesis. In my case the Lyme probably caused the gastroparesis by damaging the vagus nerve. I also have Dysautonomia (autonomic nervous system dysfunction) which is often caused by vagal nerve damage.
About the greasy foods bringing on more stomach problems - that could be gallbladder invovlement but it could also be gastroparesis (or something similar in the small intestines). Fat mkes gastroparesis worse because it slows down digestion even further. This is also true of fiber so people with gastroparesis or GI motility disorders in general are supposed to avoid fat and fiber.
Here are a few sites with information about gastroparesis and motility disorders in general.
I hope some of that info helps. A gastric emptying scan (GES) isn't too bad. You eat something (usually a scrambled egg) with a radioactive tracer in it and then either lie under a machine for the duration of the test (usually 90 minutes but some are as long as 3+ hours) or have pictures taken periodically to chart the emptying rate of the egg.
This test doesn't look at motility problems in the intestines, but there is a test called a small bowel manometry that does look at that. It's more invasive but can be helpful when the GES doesn't reveal what's going on and a motility disorder is still suspected. What are her GI symptoms?
posted
I know what you mean z man. Just like I have numbness, tingling pain, burning, weak left side, twitches, floaters and so on....MRI's, spinal tap, EMG, evoked potentials all normal. The signals just aren't working but it's invisible on testing.
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hshbmom
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Hi folks,
Dd was in severe pain this morning & afternoon...10 out of 10. She was crying & wandering aimlessly around the house as if trying to escape the pain. The new FP was out of the office today, so we took dd to the urgent care facility. He took an x-ray and saw stool accumulating in the ascending colon. He gave her a prescription for a GI pain reliever. It has helped, but what's cauing her so much pain? Whatever it is doesn't show up on the x-ray. Dd feels better right now. I was sure dd would end up in the hospital today.
Good News: I set up a LLMD appointment for my dd in Florida on Monday. I don't know much about this physician, other than they treat children. It's a GP. I'll call tomorrow to find out if they treat using the ILADS guidelines. I don't want to waste the time & money if they won't treat her according to the ILADS guidelines.
Our new FP set up an appointment for dd with the local infectious disease physician. The appointment is for next week, but I hate to wait that long for an appointment. Like LymieTonyZ said, she's falling apart in front of our eyes, organ by organ. First it was the seizure disorder and other cognitive symptoms, so we know her brain is involved; then her joints got involved, affecting her neck, back, hips, knees, and today her foot. Now her gastrointestinal system is taking a beating. I'm afraid to wait until next week to start her treatment. We know she has Lyme disease; she needs treatment now.
Dh & I went to the infectious disease physician's office today; we talked to his nurse. She asked him a few questions for us. He will only use the IDS treatment methods. I'm going to cancel that appointment.
The dobutamine stress test is scheduled for tomorrow afternoon. I'll call the FP tomorrow to see if she can try the excercise test first; if she can't, then we'll do the chemical stress test. Dd had hip & knee pain, and had hip surgery on both hips in the last 10 months; she may not be able to run on a treadmill.
Can they reverse the effects of the stress drug if dd reacts adversely to it? Dd said she's prefer to take the drug by IV, rather than have to run on a treadmill. She's scheduled for a gastric emptying test next week.
Annie, dd's only gastric problems are pain. I'm not sure the pain is specifically from the stomach. She has abdominal pain when she eats greasy food and wheat (Frosted Mini-Wheats or pancakes). The pediatric GI said she has H. pylori and is treating her with flagyl, amoxicillin, and prilosec. The FP said she has irritable bowel syndrome, mitral valve prolapse, and migraines. I don't know why the FP wants the gastric emptying or the stress test. Maybe he's looking for signs of regurgitation on the stress test. She vomited feces and had poop breath 2 weeks ago, but no one seemed very concerned.
Tracy, the pediatric GI said to increase the fiber in dd's diet. She's always had a very healthy diet...whole wheat bread, fresh vegetables & fruit, etc...and she drinks plenty of water. That's why I found it hard to believe she had a problem with constipation.
Is there a test for vagal nerve paralysis of the gut?
What decision-making steps are used to determine if a patient would benefit from IV antibiotic therapy? With all my dd's symptoms, I'd like to see her treated by IV using the big guns. I don't want he to miss a quarter of school this year. I want to get her healthy as fast as possible.
Do you think this is possible? I hate to put dd through IV treatment, but it seems to me she might need it.
Nancy
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posted
Let me know if you need more names of LLMD's in FL.
Hope she is feeling better tomorrow. I also vote for more fiber. Have you upped her magnesium intake?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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hshbmom
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Yes, TuTu, I found some good quality Mg tablets.
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lymie tony z
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Hello again...
Please pm me with your fla doctor info...and when you're comming down here.
IV Ceftriaxone(Rocephin) I believe would help your DD....
Vancomycin is the heavy hitter but many docks won't use it because it's very tough on the gall bladder...sludge...
Make sure when you're on the IV she also takes a cyst buster...you already have flagyl on hand which is what is used to bust cystic forms...
The H-pylori cross reference in lyme tests is due to similar proteins in each bacteria...zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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hshbmom
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We have an appointment with a promising physician on Monday afternoon.
The pediatric GI plans a GI & pelvic ultrasound on Tuesday. She said dd should not still be in pain or be having constipation.
Dd's FP ordered a stress test because he found a mitral valve prolapse. I took dd to the hospital for the dobutamine stress echo cardiogram yesterday; they refused to do it. They called the FP's office early yesterday morning to tell him they wouldn't do it. Someone at the office was supposed to call to tell us not to go to the hospital for the test.
They have never done a chemical stress test to anyone but an adult at our local hospital. The cardiologist on duty said he wouldn't even do an exercise stress test without examining her first. He said he's had several patients with Lyme disease. I think they want to find out if the mitral valve prolapse is causing regurgitation. She's never had this before all this Lyme mess started.
The cardiologist wants to see my dd next Wednesday morning. She has so many appointments right now, I have to keep a schedule with me.
She's still having abdominal pain & constipation. I pray she doesn't get impacted again. We've got to find out what's causing her pain. This is not normal. The pain & constipation could be caused by paralysis of the vagus nerve, which innervates the digestive tract, causing paralysis or partial paralysis of the gut. Thanks for posting that article treepatrol.
I talked to the Lyme literate doctor in Florida this morning.
This doctor uses the ILADS guidelines & alternative therapy. He plans to attend the ILADS meeting next month & present a session about alternative therapy.
He uses the Bowen Lab in Florida. I've read it's one of the better labs. He also said he'd be willing to have a consultation with dd's new FP.
He said that you cannot treat Lyme disease with antibiotics alone & expect to recover.
Sounds like we're heading in the right direction! I'm thrilled. My dd needs relief from the joint and abdominal pain soon.
Nancy
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posted
Someone correct me if I'm wrong, but stress testing is used w/ an EKG (also called ECG)-- electrocardiogram.
It is used for finding arrhythmias, heart muscle damage, electrolyte imbalances, conduction abnormalities, and things like left ventricular hypertrophy and mitral valve stenosis (hardening).
For an ECHOcardiogram, there is no need to stress the heart, actually you need to be quite still -- it's basically a fancy ultrasound.
I saw an ECHO on a pt last week ... they are looking at the valves and how they function, how blood flows through, any abnormal communications between the left and right side of the heart, any leaking of blood through the valves (as in valvular regurgitation), etc.
So I'm not clear why they want an EKG?
Sooo sorry she's having so many problems!
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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I agree -- an echocardiogram is generally ordered prior to a stress EKG. Hubby has had both tests numerous times over the years. He has a mild mitral valve prolapse probably from birth (diagnosed at age 3) -- he is now 51. Fortunately for him the Lyme has not affected his heart.
An EKG does not involve running -- they can do what is called a modified Bruce protocol -- this takes longer, but the treadmill does not go as fast. The whole point is to get your daughter's heartrate to a certain rate -- determined by age I think.
Since the LLMD you will be seeing is into alternative medicine -- these are a few of the alternative tests hubby has had which were most beneficial. These tests are functional medicine tests.
1) Leaky Gut test -- this could be a major cause of joint pain -- Many labs offer this including Great Smokies
2) ION test -- measures nutritional status (especially items relevant for neuro function such as CoQ10 and B vitamins plus red blood cell minerals including magnesium) and markers for Candida
3) Genetic detox testing -- another Great Smokies test -- measures glutathione status and methylation pathway among other things
My personal opinion is that you must get your daughter's G.I. function working better especially before you try IV antibiotics. Obviously she is already in toxic overload and IV antibiotics which are very powerful could exacerbate any seizure tendencies.
Every time hubby has had IV antibiotics I have always had to use IV Ativan (usually once or twice during each dose of IV antibiotics). This has been scarey to say the least. Many times he became confused with slurred speech or unable to speak at all and other times muscle spasms caused temporary paralysis.
And all this happened while he was on very high doses of supportive nutrients including IV magnesium and IV vitamin C. I don't want to scare you -- I just want you to take your time to evaluate all your options and remind you not to make any quick decisions.
You are most likely going to be overwhelmed with info at the LLMD appointment. If you have any doubts at all ask for 24 hours to evaluate any suggested treatment plan.
IV meds are really the only ones that have ever helped hubby, but many do get well on orals only -- it might take longer, but they do not have the same potential for serious side effects and the herxes may be less severe.
Hubby generally starts with 1/4 or less of the suggested dose of any antibiotic and ramps up from there. This is a very important point to ask the doc.
Good luck.
Bea Seibert
Note: Great Smokies lab has been bought and the name has changed to Genova Diagnostics. The link I gave will still work.
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hshbmom
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Hi Hayley, as far as I know, they want just a stress echo cardiogram...not an EKG. Not an EEG either; she's already had that.
Bea, thank you for the test information.
IF we decide to go with IV treatment, would they do it there, or send her home & start treatment at home? Should I plan to stay near the LLMD's office for a few days?
He said he wants to test her first to be sure she has Lyme, but I've already got a couple pages of Lyme results...a positive Lyme antibody test from Quest, and a Igenex Western Blot IgM report shows
30 kDa + 41 kDa IND.
She has the tick bite & rash history, and herx-like signs while being treated with flagyl & amoxi (for H. pylori). How much more testing could the LLMD want before starting treatment?
Also, I called the author of "Bell's Palsy of the Gut". I left a message. I hope to get the author to talk to dd's pediatric GI doctor. Hey, it's worth a try! I have nothing to lose. The GI admitted she knows little about Lyme disease.
Nancy
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The GI admitted she knows little about Lyme disease.
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