posted
Six months ago before I began this quest I was still seeing non-llmds, I had a neuro appt. He gave me medication neurontin(supposedly it has
some benefits for chronic pain sufferers). He did all the usual tests(push down on my hand, try to push my hand up, stand on 1 foot and balance... and an MRI on my spine(which showed
arthritis). No blood tests or anything else. Meanwhile, while waiting for my follow-up visit, I got bell's palsy, went to er they did lyme test (negative) and I'm waiting for an appointment with
an llmd. This appt. is next Thurs. Should I waste any more time and money going or just wait for the llmd(which could be months away)?
Posts: 111 | From Pa | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I'm confused WHICH apt. is this Thursday, with the old neuro who did not do any blood work?
or with a doc the ER folks suggested. I assume the follow-up with the neuro.
1. Where was your lyme test done and what kind of test?
2. Did you get a hard copy of the results, or just told results?
Even with a negative tests, no bands, from the best lab, as you probably know, Bell's Palsy (and arthritis) is highly suggestive for lyme. And lyme is a clinical dx, tests are often not accurate enough. Medications taken - or not taken - can also affect the results.
These questions, though, if you clarify, then your answers as others come along may be clearer, too.
You might call the LLMD's office, inform them of the bell's palsy and ask if they have any cancellations or a list. Perhaps they will have a suggestion of who else to see in the meantime.
I certainly would hesitate going back to a doctor who does not believe in lyme if you want to have that properly assessed. A good LLMD, too, will assess for other TBI or possible infections.
When you do get to the LLMD, have the actual MRI pix transferred too, not just the written report. They will need to see the pictures.
============================= I looked up just one article - it suggested steriods for the treatment of Bell's Palsy. Ugh... you may know, but just in case not, steroids are contraindicated (a strong "no-no") for anyone who might have lyme. As per current ILADS treatment guidelines through www.ilads.org
posted
Follow-up is with the neuro. He doesn't even know about the bell's palsy. I was only told to call my gp for the test results so he could prescribe
10 more days of abx. I was given 6 days of steroids also at the er. I was told over the phone that the test was "fine". I didn't even know there were different tests at the time in
the er. I have been telling llmds that I called about the bell's and all the other symptoms. The arthritis only scratches the surface of them.
The only ones I don't have are the more serious cardiac symptoms. The llmd with the 6 month wait sent me a checklist so that when I do get in that
will already be filled out.
Posts: 111 | From Pa | Registered: Oct 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Black POWER!!! There you are!!
Sorry; been offline a while.
UGLY shoulder issues.
But enough about ME.
A coupla ideas...
1. Might some doc humor you by signing for an IgeneX western blot??? See, the ELISA (the test they likely ran) is about as useful as toilet paper. (Unless you happened to get lucky and have a positive one.)
2. You COULD call up IGeneX. Ask for test kit 188 and 189 (IgG and IgM). Instruct your idiot neuro (nearly guaranteed) that you understand that the preliminary lyme screening tests are worthless even according to Johns Hopkins; therefore you'd like to see the results of a really good Western Blot before proceeding. Therefore, would he sign for this???
Then you share the results HERE, since your neuro will be too simple to understand them. Or even if he understands them, he won't know how to treat you.
But it might buy you a little time and some scrips.
You are gonna need the IGeneX western blot ANYWAY, no matter what. Now is as good a time as any. Now is actually better, when you're NOT on antibiotics.
Then, depending on outcome, either (a) the neuro will RX you some antibiotics, or (b) you can find other ways to get some. Not that I'm advising you to do that without a doctor, but in desperate times, well....
With an IGeneX test in hand AND getting on various LLMD waiting lists for cancellations, SOMETHING has got to give!!!
Sending you hugs, and prayers for perserverance. Nuthin's worse than seeing the answer in sight but not quite being able to grab it!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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okay, I'm not a doctor, but none of us are.
at least with the steroids you also got abx (antibiotics) so that helps in case the steroids would have allowed the lyme to flair.
There are many kinds of tests and it's a very complex subject in and of itself.
right here, on the left menu, you'll find lots of literature.
First thing tomorrow, I'd sign a release form for a copy of the lyme test to be sent directly to you ASAP. Don't ask them questions. Just get the complete copy.
I hope someone else comes along with some good support. This all may be overwhelming, but there's a lot of experience on this board.
As your appt. with the neuro on Thursday, you have just 24 hours to cancel, so if you get a good sense from this doctor, and if you can honestly ask your questions and voice your concerns, I'd like to say it may be helpful.
But, I have never seen a neurologist that thought much outside of the box, so to speak. The nuances and variances in lyme are usually hard for someone with their black and white training. They really like measureable tests and repeatable outcomes. And who wouldn't? But lyme is very unique. It is nearly a sub-specialty and it takes a very long time to really learn about it.
I guess you just have to go with your gut feeling but be wise. And don't agree to a lumbar puncture (spinal tap). Both lyme and MS literature suggest that it is not very reliable in dx (diagnosis).
Some neurologists may be very good at what they do. But their professional organization follows the IDSA guidelines. So, even if you had lyme, they would not treat it as thoroughly as a doctor who follows the ILADS guidelines. Unless a doctor is ILADS educated, I wouldn't go near them.
I hope you can connect with the closest support group for some practical suggestions.
The Clinical Advisor is a monthly journal for nurse practitioners and physician assistants in primary care.
From the May 2007 issue of Clinical Advisor
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR' By Virginia Savely, RN, FNP-C
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Controversy over the treatment of a particular disease is not uncommon. There are many illnesses for which there are different schools of thought and more than one treatment method--
e.g., heart disease, prostate cancer, and breast cancer. When it comes to Lyme disease, a bacterial infection caused by the corkscrew-shaped spirochete ,Borrelia burgdorferi, the battle lines are particularly distinct, and the opposing viewpoints reach vitriolic proportions, to the ultimate detriment of the patients.
Lyme disease, which is most commonly acquired through the bite of an infected tick, has been reported in every state and has become the most common vectorborne disease in the United States
. In 2005, the CDC received reports of 23,305 cases, resulting in a national average of 7.9 cases for every 100,000 persons.
In the 10 states where the infection is most common, the average was 31.6 cases for every 100,000 persons. The CDC estimates that the disease is grossly underreported, probably by a factor of 10.
Meet the players ****************
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, and
the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties.
IDSA maintains that Lyme disease is relatively rare, overdiagnosed, difficult to contract, easy to diagnose through blood testing, and straightforward to treat (www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html. Accessed April 6, 2007).
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, (and)
and difficult to treat, especially when treatment is delayed because of commonly encountered diagnostic difficulties (www.ilads.org /guidelines.html. Accessed April 6, 2007).
Diagnosis: Where it all begins *****************************
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.
However, Lyme disease is often missed during its early stage when it could be most easily treated (Table 1).
Since the deer tick is no larger than the period at the end of this sentence, it is not surprising that people frequently do not realize they've been bitten.
In a hairy part of the body, the tick is almost impossible to see, and even when it is noticed, it is often mistaken for a mole or scab.
When the tick latches on, it injects salivary components that anesthetize the area and decrease inflammation at the site of the bite, leaving the victim unaware of the tick's presence and allowing it to feast undisturbed.
The erythema migrans (EM) rash is commonly known as the ``bull's-eye'' rash for its characteristic shape.
The CDC maintains that a patient presenting with a bull's-eye rash does NOT require testing for Lyme disease because the rash is diagnostic in its own right.
However, the rash does not always present in the classic pattern of concentric, round, red circles. EMs can be oval in shape and/or solid in color, with shades of pink, purple, and red.
The rash may or may not contain pustules, itch, feature a dark spot in the middle, or have a denuded center. The size varies from that of a quarter to 12 in or more.
Some victims develop a diffuse rash over the entire body. EMs are commonly misdiagnosed as spider bites, cellulitis, or ringworm. To complicate matters further, as many as half the people who acquire Lyme disease from a tick bite develop NO RASH at all.
Frequently, a clinician mistakenly assumes that there are no Borrelia-carrying ticks in the patient's geographic area and fails to include the disease in the appropriate differential diagnosis. Lyme disease should be considered regardless of where a patient lives.
Ticks are carried on numerous animals, including household pets, rodents, deer, and birds, so it is little wonder that Lyme disease-transmitting ticks are not confined to a few distinct geographic areas.
A travel history should be obtained to determine whether the patient has recently traveled to a particularly Lyme-endemic area (the northeastern United States, north-central United States, and the Pacific coastal region).
Most clinicians are not familiar with the varied signs and symptoms of Lyme disease (Table 2), and this contributes to misdiagnosis (Table 3).
Children may present differently than adults, with predominant symptoms being changes in behavior and school performance.
In affected children, parents typically report mood swings, irritability, obsessive-compulsive behavior, and new-onset attention-deficit/hyperactivity disorder. Physical symptoms in children may include fatigue, frequent headaches or stomachaches, urinary symptoms, and migratory musculoskeletal pains.
When a patient presents with a collage of seemingly unrelated symptoms, there is a natural tendency to assume that a psychological component is at play.
Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
The testing conundrum *********************
The CDC is aware of the insensitivity of the tests for Lyme disease and encourages clinicians to use judgment rather than a test result to make the diagnosis (www.cdc.gov/ncidod/dvbid /lyme/ld_humandisease_diagnosis.htm. Accessed April 5, 2007).
As previously mentioned, however, most clinicians do not feel confident in making this judgment call and continue to look to unreliable test results for confirmation of disease.
The Western blot test **********************
Because B. burgdorferi is an extremely difficult bacterium to culture in the lab, testing has relied on detection of antibodies to the organism.
The Lyme enzyme-linked immunosorbent assay (ELISA) gives a titer of total immunoglobulin (Ig) G and M antibodies and is currently the accepted initial screen for suspected disease.
Since a screening test should have at least 90% sensitivity, the 65% sensitivity of the commercial Lyme ELISA should lead to its reconsideration as an acceptable screening tool .
The Western blot, which is commonly used as a confirmatory test for Lyme disease, is more sensitive than the ELISA.
While the CDC has published strict criteria for positivity on the Western blot to make a more exclusive cohort for epidemiologic purposes, it never intended for these criteria to be used for diagnosis.
Unfortunately, the restrictive criteria omit several of the important bands on the blot that are highly sensitive markers for the presence of B. burgdorferi (see ``Interpreting the Western blot,'').
Clinicians should become acquainted with the relative sensitivity and specificity of each of the bands on the blot to make an appropriate assessment for diagnostic purposes.
A negative test based on epidemiologic criteria may be a positive test for diagnostic purposes.
Treatment dilemmas ******************
The Lyme spirochete presents a formidable adversary. With more than 1,500 gene sequences, B. burgdorferi is genetically one of the most sophisticated bacteria ever studied.
Treponema pallidum (the spirochete responsible for syphilis), for example, has 22 functioning genes whereas the Lyme disease spirochete has 132.
Borrelia burgdorferi's stealth pathology makes eradication of the disseminated organism a near impossibility.
Before the tick delivers its inoculum of spirochetes into the host, it injects a substance that inhibits the immune response, allowing the spirochete to gain a strong foothold.
The spirochete itself secretes enzymes that help it to replicate and infect the host.
Once disseminated throughout the body, B. burgdorferi secludes itself and becomes difficult to detect through laboratory testing--and by the host's immune system. The bacterium may hide in its host's WBCs or cloak itself with host proteins.
Furthermore, it tends to hide in areas not usually under immune surveillance, such as scar tissue, the central nervous system, the eyes, and deep in joints and other tissues.
Phase and antigenic variations allow B. burgdorferi to change into pleomorphic forms to evade the immune system and antibiotics.
The three known forms are the spiral shape that has a cell wall, the cell-wall-deficient form known as the ``L-form'' (named not for its shape but for Joseph Lister, the scientist who first identified these types of cells), and the dormant or latent cyst form.
Encapsulating itself into the inactive cyst form enables the spirochete to hide undetected in the host for months, years, or decades until some form of immune suppression initiates a signal that it is safe for the cysts to open and the spirochetes to come forth and multiply .
Each of these forms is affected by different types of antibiotics. If an antibiotic targets the bacterium's cell wall, the spirochete will quickly morph into a cell-wall-deficient form or cyst form to evade the chemical enemy.
Borrelia burgdorferi has an in vitro replication cycle of about seven days, one of the longest of any known bacteria.
Antibiotics are most effective during bacterial replication, so the more cycles during a treatment, the better.
Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles.
To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks.
Within the tick gut are hundreds of different types of pathogens. How many infect humans is unknown.
Some have been identified and are known to intensify morbidity and complicate treatment of Lyme disease.
Awareness of three coinfecting genuses in particular--Ehrlichia, Bartonella, and Babesia--has increased, and persistent infection with these organisms has been described.
Testing for and treating these coinfections has become part of the approach for clinicians who specialize in the treatment of Lyme disease.
Treatment methods *****************
IDSA guidelines recommend treating certain high-risk tick bites with a prophylactic single dose of doxycycline. This is recommended only if the tick is clearly a deer tick that was attached for 36 hours or more, the patient was in an endemic area, and if treatment can be started within 72 hours of the time the tick was removed.
Most ILADS practitioners treat any high-risk tick bite with a full month of doxycycline.
If a patient presents with EM or has a positive Lyme test, IDSA guidelines recommend treating with either doxycycline, cefuroxime, or amoxicillin for 10-21 days.
All other antibiotics are specifically not recommended. After the prescribed amount of time, treatment is discontinued whether symptoms remain or not.
However, if symptoms remain severe after the patient has been off the antibiotics for a few months, treatment with another two to four weeks can be considered. One month of IV antibiotics is recommended for severe arthritis or neurologic disease.
IDSA stresses that persistent symptoms do NOT indicate chronic infection and that prescribing long-term antibiotics to patients unresponsive to the typical two- to four-week course is USELESS and potentially harmful.
``There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease,'' the guidelines state.
``Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (six months or longer) subjective symptoms after recommended treatment regimens for Lyme disease.''
Patients who continue to suffer from persistent fatigue, pain, and cognitive disturbances after a traditional short course of antibiotics are rare, the IDSA panel claims.
These patients have developed ``post-Lyme syndrome,'' probably due to an immune system that cannot shut down after the infection is gone. This syndrome can only be treated with symptomatic care and tincture of time.
ILADS, on the other hand, promotes the idea that the Lyme spirochete is very hard to eradicate and persistent symptoms are due to ongoing infection.
This organization's approach is to treat with antibiotics as long as symptoms remain. Off-label combinations are often used based on clinical experience.
Variable response to antibiotics and occasional antibiotic resistance are thought due to the fact that there are over 100 strains of B. burgdorferi in the United States and 300 strains worldwide.
Since the Lyme spirochete is adaptive and morphs to a new cell type when under stress, clinicians who advocate aggressive, long-term treatment support giving two or three different classes of antibiotics at the same time and changing the treatment protocol every two to three months.
Higher-than-normal doses of antibiotics are given to achieve better penetration of both the tissue and the blood-brain barrier.
IM injections of long-acting penicillin or IV administration of antibiotics are recommended for patients with neurologic disease.
Precedent for the safety of long-term antibiotic use has shown that the benefits outweigh the risks.
According to ILADS, treatment is complicated by the frequent presence of coinfections, which can intensify symptoms and prolong treatment.
Therefore, antibiotics that target the coinfections are usually prescribed prior to or along with those that treat Lyme disease.
Table 4 lists treatment options used by ILADS clinicians to target the various forms of the B. burgdorferi bacterium, and Table 5 lists treatment options for the most common coinfections.
Occasionally, Jarisch-Herxheimer reactions complicate Lyme disease treatment. These symptom intensifications are due to elevated cytokines and toxins released during B. burgdorferi die-off.
Many patients notice that symptoms occur cyclically (every 21-28 days). When these intensification reactions occur, the treatment can be temporarily worse than the disease.
It is difficult to decide when to stop treating Lyme disease since there is no test that demonstrates a cure.
Because of the lack of simple culture techniques and the low sensitivity of antibody tests, a negative test does not rule out infection.
Treatment cessation is based on symptom resolution, which means that symptoms may return if the infection has not been eradicated.
The road ahead **************
Rather than shy away from the complexities and controversies of Lyme disease, clinicians should welcome the chance to learn about this condition. Lyme disease is much more prevalent than most realize. Clinician education will reduce patient suffering and hopefully put an end to the ``Lyme War.''
For a list of references used in this article, contact the editor via e-mail ([email protected]) or telephone (646.638.6077).
------- Ms. Savely is the owner of TBD Medical Associates in San Francisco. She is a nurse practitioner who specializes in treatment of Lyme disease and other tickborne illnesses
posted
Hang on everyone till I go get my medical degree. Holy smokes that's alot to take in. Now for some questions. I must have misunderstood what i read
before. Are you saying I can order the igenex test? I thought I had to get a doctor to order it. What exactly is signing off? Does that mean I order it then ask a doc to submit it? Honestly,
I used to understand alot better. This is why I don't run my own business anymore. Would it be wise to have my husband deal with the docs? He might understand better. I feel like I have the
IQ of a rock.
Posts: 111 | From Pa | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Hey, the rock thing, we all get it. Sorry to overwhelm you. Someone should make "Cliffnotes" for all this, eh?
You can get the test kits from Igenex but a doctor has to sign and order the test page. If your doctor would be willing, that could get you ahead of the game time wise. But be sure to get expert advice on what to do around the test.
Taking abx and timing for the most accurate results matters, but I don't know details.
INSURANCE ? Igenex may take medicare, but I am not sure and don't know about other insurances. You can call them.
If you have a LL naturopathic physician, they can also order the tests.
You might just read the SAVELY article. take a rest and go from there. If you are comfortable with the neuro, you might say "look, I came across this article I'd like to discuss . . . I'd really like to have the western blot and coinfections tests. Can we do that? I'd prefer this lab as they specialize in Tick borne infection testing."
It would take a while for the test kit to reach you anyway. I'd also be careful about where the blood would be drawn. The samples should be treated and shipped specifically as instructed.
To the left of this page, on the menu . . . 3rd down is "support groups" see if there is a contact number for someone near you.
get out my newbie package, and look around pages 8 - 11; then there are 3-4 pages in detail about igenex testing.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Dear girl,
They mail the kit to YOU.
All you take to the Duck-tor is the form to sign off.
Then, you take the kit + form to your local blood-sucking place. Stick out your arm, they draw the blood, use your kit, then you stick it into your nearest FedEx receptacle on a Monday or Tuesday.
There you go. That's all there is to it.
Matter of fact, you can prolly have the doc sign the form TODAY, and call today to have the kit sent to your house. That way, you don't have to see the doc anymore. (At least till the results are in.)
Make the doc sign it today. Make him put his FAX number on it. Check off tests 188 and 189. Fill in credit card info or whatever; they do not take insurance up front but they'll give a receipt so you can turn it in to your insurance company for reimbursement.
Then HANG on to it till your test kit comes.
You are ALL OVER IT.
Holler or PM me anytime!! Don't feel shy. It really IS overwhelming!!
Hugs,
Michelle PS Inwardly roll your eyes when your Duck gives you the expected blather about how you maybe "used" to have lyme, blah blah blah.... They're really not very smart. As Keebler says, resist any suggestion to have a spinal tap to "prove" whether you have lyme, they're only about 20% accurate in detecting lyme but chances are your neuro is too dull-minded to know that. Just smile and nod!!
Posts: 3193 | From Northern California | Registered: Apr 2005
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Howdy Black Powder!
If you are still having a problem getting an LLMD appointment, please send me a private message. Perhaps I can help you.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
Hi Black Powder - I just did the IGeneX testing yesterday as a matter of fact. I called their 800 number and asked them to mail a kit to me about a month ago.
I requested the Western Blot #188 and #189.........as per my doctor and the nice people here on the board.
It took about 2 weeks for it to get here (TX), and I took the whole thing with me to my doctor's appointment yesterday. My doctor signed the lab sheet and put some *code* on it, probably a dx?
I went downstairs to the lab, gave them the IGeneX lab slip and testing kit. It has very specific directions to follow, but it's not hard to do.
HOWEVER, the lab tech had not done a "courtesy draw" for IGeneX before. She clearly wasn't sure what she was supposed to do and didn't appear too interested in finding out!
I ended up on the phone with IGeneX. I wanted to make sure we were doing it right, because the lab tech wasn't that concerned. Yes, I was very annoyed at the whole situation, but I'm glad I called them. They were extremely helpful and my mind is at ease knowing that we did it correctly.
I'm sure you won't have any problems, I think it was pure coincidence (I hope!) that this lab tech was clueless. To be on the safe side.......I would read the paperwork beforehand so you know what's going on! I successfully got the lab kit FedEx'd yesterday, and I'm told it will be 3-4 weeks before the results come in.
In the meantime, my doc put me back on abx. I had been off the doxy for 12 days to do the labs yesterday, and now she changed me to Ceftin. I seems I've got a sinus infection as well. She says the Ceftin will hit both the sinus infection and the Lyme.
Be sure to ask your doctor or IGeneX about the "timing" of abx before testing. My doc had me do 4 weeks on doxy, then off doxy for 10-14 days, and to test during that time. I tested on day 12 of no abx.
I've probably made this sound harder than it is, which I didn't mean to do! Just get your kit ordered, so you'll hurry up and have it ready to go! Good luck!
Take care,
terri3boys Posts: 268 | From Texas | Registered: Aug 2007
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posted
Thank you all so much. Truly appreciate it. I'm having so much trouble explaining this to people. I think I'll send Keebler's info to them 2.
One person said "My friend had lymes she got meds and she's all better and SHE tested positive. Why do you insist it's lymes?"
I wanted to say First of all there is no friggin' s in lyme second she was probably treated immediately Third I need the breath I'm wasting on YOU!!!
Then I start cussin' in Italian and walk away. Most people in my life are trying to talk me out of this quest and say you're just depressed and
that can make you sore. Sore, he**, I want to die So everyone's support has been a lifesaver here. Now I want a lifesaver and a Keebler fudge graham Posts: 111 | From Pa | Registered: Oct 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by blackpowder: I wanted to say First of all there is no friggin' s in lyme second she was probably treated immediately Third I need the breath I'm wasting on YOU!!!
Then I start cussin' in Italian and walk away. Most people in my life are trying to talk me out of this quest and say you're just depressed and
that can make you sore. Sore, he**, I want to die So everyone's support has been a lifesaver here. Now I want a lifesaver and a Keebler fudge graham
NOW you're talkin'!!!!
Good luck tomorrow at the neuro duck!!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Very funny . . . a Keebler Fudge Graham . . . ahhh.
You'll have to settle for a sizzlin' baked appled - no cookies here - I know Keeblers are cute cookie suppliers but I want to live in a tree so I figure I can do that and just pick the apples.
I never really thought about my "name" prompting thoughts of cookies as I can't even remember the last time I ate one. I just think of the quiet forest - a bit far from this city life.
Hey, what corner of PA are you in?
I think the SAVELY article is a good one to share. Print it from the official URL as it looks more professional than from here.
See stuff from the Newbie links & from this site - left hand menu
Oh, you asked if it would be wise to let your husband deal with the doctors. My advice is just that it depends.
YOU want to make sure the doctors know you are totally together even if ill. If your husband is a true partner in mind and spirit, his help in research and communication can be vital to your recovery.
However, be sure that if he does join your team it is clear to the doctors that YOU are in charge of your own mind and have wisely accepted the offer of help from a wise guy you have to walk with you through all this.
It's okay to say that you don't know everything about all this, but you will learn.
Good luck. Nurture yourself as best you can.
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[ 08. November 2007, 02:22 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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bettyg
Unregistered
posted
also print off YANKEE MAGAZINE's 33 page printout explaining the whole thing in large print!
go to my newbie package, and do a EDIT, FIND, type in YANKEE MAGAZINE, i think there is ONLY ONE listed in those 80 pages! it's the ultimate since it was WRITTEN BY A CHRONIC LYME PATIENT WRITER!!!!
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