posted
I am a mom who has been sick for at least 7 years. First dx with fibro then cfs.
I had Igenex test 2 years ago and was on a waiting list for a LLMD. I forgot about the wait list and was overwhelmed with my son's issues (special needs). So I finally have a chance to focus on my health now.
I saw the LLMD nurse practitioner for 1.5 hour appt. They wanted me on anti-biotics and then to retest.
I am on Tindamax and Azithromycin since early Nov.
The supplements I am on are magnesium glycinate, wobenzyme, artemisinin, alpha lipoic acid, critical liver support and critical care probiotic
I have to drive about 1 hour and 20 mins to get to the dr and then be alert for the appt then drive back. Is that hard for anyone else?
I am nervous to see what the tests say. My symptoms have worsened just before my first appt and have continued to worsen.
Then I have to have enough energy to take my little boy to Children's hosp for EEG two days in a row.
I am scared. Thanks for being here.
Posts: 34 | From southern CA | Registered: Dec 2010
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posted
Why does this post show up as one of my recent posts?
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- kay,
that just happens sometimes. I've had that happen, too. I think the computer just can't sort everything just right. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, driving is hard for most. The appointment itself can be exhausting and the to drive home even more so.
Can you find someone to drive you? Is there anyway you could stay over near the doctor's?
I do hope you find out what is going on. After many years of fear I just got worn out and really, since you want to (or need to) know the truth - try to look at that as information that will help you devise a plan to get better.
Knowledge is power.
I'm sorry that your son is ill, too. If he was born after you first became ill, be sure to mention that to the LLMD. It's very important as lyme can be passed on through pregnancy. If that is what's going on, children often respond very well with treatment (although it's no picnic, they often respond better than adults).
Be sure your son's intracellular magnesium levels are checked. Low magnesium can cause heart rhythm irregularities (as can lyme - but lyme also CAUSES low magnesium).
Good luck. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I'm glad you're finally getting care for yourself. Many of us have to travel to our LLMD. I had to fly to NY to see mine. My husband had to take me, there was no way I was strong enough to travel alone.
Why are you having another IGeneX test? Was your other one positive? All the test can show is exposure because it's an antibody test. It cannot show whether your Lyme is active or not.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Yes, we drive about an hour and 20 minutes also. Except, I drive and my son rides. It wears him out for 2 whole days. Zombie...
He hates going anywhere because it just wears him out, completely. If you are at this stage... can you get any help? Our state gives taxi rides to disabled adults... can you look into this. Family? Friends?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Even if you get a driver - rest exceedingly well for several days before and after. Plan it out so that all your chores are easier and that you will have food cooked for your return home and for days following, too.
Be sure whoever drives you avoids perfumed or scented products and drives smoothly. Also alternate fresh in when you have less traffic in front of you -- and block out any exhaust from cars in front of you. Extra distance helps. Diesel exhaust is the worst. Taking a cut lemon rind to breathe helps clear the brain after that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I just cannot have someone drive me tomorrow. My son has half days in school all week. My husband will get him ready for school and I may not be back in time for his return so husband will be here for that. Then my husband will take our son to his dr in the afternoon so I can rest.
I don't know how I could get a disabled adult status for a ride. I haven't worked in too many years to apply for disability.
Love the exhaust advice! I thought I was the only one hurrying to block out air when i see someone smoking a cigarette or any horrible smell.
My limited understanding on the reason for the second Igenex test is that the first one was negative for Igenex and negative for CDC but I still had some INDs and ++ I think they wanted me on antibiotics this time to chase out the spirochete into the blood so we hopefully get a better test result. I hope I didn't just blow it with the cost of that!
Posts: 34 | From southern CA | Registered: Dec 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A CDC positive is nearly impossible to attain.
Be sure the doctor knows all about the ++ on your past test. I hope you can save your money on the test as if you had lyme before, you never really ever need another test. They should be evaluating your symptoms but, to cover themselves, they may want a more recent test for new patients.
If you get tired, pull over and rest. Plan extra time if you can.
You don't need to be with social security disability to be able to get disable rides with volunteer organizations. Call your local United Way to get started. Just explain that you have medical issues and need to find some volunteer or low cost help.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
================================
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
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