posted
I have had an extreme exasperation of fatigue, some days cannot get out of bed till 5;30 before my husband comes home and then just move to the sofa, cognitive and attention problems, gait problems and blurry vision have all worsened. My speech, tremors and other weird symptoms still happen daily but haven't worsened.
In the past 4 weeks I have had maybe 3 good days where I have been able to participate in life; this is taking a major toll on my family.
My MD told me to take my temp every day and running 94.6-96.8. My blood pressure also drop when I send up. I did neuroadrenal tests ON A REALLY GOOD DAY and got results.
MD says I have a problem with "HPA axis, low sympathetic tone, sub optimal adrenal function, high immune activation, and elevated oxidative stress". Result for "central imbalance" was not present but my MD thinks it is elevated due to my symptoms.
My neurotransmitter results showed low GABA, elevated Dopamine and DOPAC and very high epinephrine. My cortisol level was low in the morning, normal mid-day (but still can't function) and high end of normal at 11pm. My DHEA is very low.
He said I have a HPA axis problem but I still don't know what that means (even though I am (was I guess; haven't been able to work since May 2016 when all this started) a clinical nurse in neuropsychiatry.
He ordered thyroid and hormone testing which I am supposed to have this week. He started me on Immuwell, Kavinace and AdreCor with Licorice root and stopped my treatment for mold and the binders for the next few weeks because I am not well.
I hope I am explaining myself well. Does anyone know about this? My family and I are struggling.
My god I just read what I wrote and sound totally stupid. Don;t know how to correct it and sorry but I'm sure the neuro Lyme people understand...Oh and I mailed my residual functional disability from SSDI back to myself TWICE because I couldn't figure out the return instructions. Unbelievable if you knew me before..
Posts: 86 | From LA | Registered: Jul 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- All that you describe is very typical with lyme / TBD (tick borne disease). No surprise at all, though so sorry it's such a rough ride.
My concern is that it sounds like you have not yet found an ILADS educated LLMD or LL ND as those you deal with seem not quite up to speed.
The HPA-axis stuff would be no surprise at all to any LL doctor. It is so typical with lyme, it's unusual when it's not really badly affected. But it cannot be treated without addressing lyme / TBD.
Yes, you need adrenal support but, no, that will not be enough - not by any stretch - unless lyme /other TBD is fully considered, directly and assertively addressed.
Now, if you don't have access to a fully lyme literate doctor, there are still ways to win, of course. Take care.
" . . . specialist at Baylor who said I have psychogenic movement disorder.
He was not impressed by my IGENEX testing which was equivocal but this was done after 45 days of antibiotics and treatment with high dose steroids. . . . "
[end quote]
It your earlier posts, it was noted that 45-days of (assuming to be just one) antibiotic is not enough to address lyme when it persists.
You appear to not have had other TBD assessment.
And the high STEROIDS were also noted by replies in their ability to perpetuate infections. Sorry to mention that again, yet, it's an important factor.
It's seems (to me) that you do not have proper doctor.
Of the 3 supplements you list, all are just for support, nothing directly addressing lyme / TBD.
The Scutellaria baicalensis - and licorice - are the only thing that I see with any degree of anti-infective support -- but not enough not by a long shot. These supplements don't address the infections.
In the ImmuWell,
The L-glutamic acid HCl is of concern to me as that can be destructive to nerve fibers of those with lyme. It's very excitatory, too, and can cause trouble with adrenals.
Trouble is, with a proprietary formula, you don't know how much you are really taking. And ANY excess from what's in your food might be too much. As it's listed FIRST on the label, it's likely the highest dose of all ingredients.
See the second post after the ingredient post below for more on that.
And the 4-amino-3-phenylbutyric acid - a GABA support substance in the Kavinace
could be too sedating for you. Just consider how you feel with these. All the GABA supports I ever tried just turned me to mush, sleeping, dozy, groggy mush.
Those are also very expensive brands, so very expensive. It's possible to find similar products at a fraction of the cost. While these are very well thought out formulas and a good reputation, most with lyme simply are not able to maintain taking such high cost formulas for support solely.
Any doctor who knows you have lyme and is just letting this be your treatment plan is not the kind of doctor you require.
Treating lyme, assessing other tick born infections is the KEY. First and foremost. -
[ 03-06-2017, 05:36 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If others would like to take a deeper look at the supplements you listed:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Glutamic acid . . . L-Glutamine
can help heal the gut lining, however, it may be best to start with a very tiny dose like 1/8 teaspoon - but even that can be dangerous for folks with lyme
for those with neurological issues, be very careful with only the lowest dose possible (if other things do not first work). Here's why: too much can damage our nerve cells because of the myelin sheath compromise lyme causes.
It can also lower the seizure threshold severely. I found that out the hard way, over and over as it was not clear to me until I stumbled upon the articles in set below.
It can also make anxiety zoom to the moon. Same with tinnitus.
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG (monosodium glutamate) and can be very excitatory -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hi - you need to be working with an experienced Lyme-treating doctor, as what you're describing is typical Lyme symptoms. You can get referrals by posting in the Seeking a Doctor section - put LA in the heading.
HPA is hypothalamus-pituitary-adrenal axis. Lyme is a brain infection initially, as the bacteria like lipids - ie fat - and our nerves are mostly made of lipids. So our brain, spinal cord and nerves get inflamed, and it throws off our body's management.
Treatment for Lyme lands in three areas - kill/deter the organisms, detox, and fortify the body. We discuss all three areas here all the time.
Re fatigue, the Lyme bacteria use up our magnesium for their reproduction, so then we don't have enough for our ATP cellular energy cycle.
It's a good idea to be taking some magnesium. There are several kinds of magnesium and we need to find out which kind we tolerate.
I also lived on flower pollen for awhile - it gave me energy.
For eyes, I have found that drinking mangosteen juice, an anti-inflammatory juice, can stop my Lyme eye symptoms. I drink the Mango-Xan version, as it's the most tart. Found in health food stores and online. I drink about an ounce a day.
We're all different so we each get to see what we respond to.
Posts: 13117 | From San Francisco | Registered: May 2006
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Just woke up (ugh) and my eyesight is actually good (not blurry) so can respond...again thank ya'll for responding.
I did just re-read Dr. B's diagnostic hints, treatment info etc and he mentions problems with the HPA axis... Keebler how did you get so knowledgable??? You are a life-line in this lyme hole I'm in.
Now to re-read about how to get a Lyme MD. At this point have spent so much money, trying to not spend airfare, hotel etc, its a moot point and just dumb. Again Keebler thanks for reiterating what I should have done from the beginning.
Hoping there is one in Austin, Houston or San Fransisco my children live in those cities and there are Lyme support groups in those cities as well so thinking they might.
Robin, I looked for that juice at Whole Foods and they do not sell it anymore. My daughter said it is the main ingredient in Vemma but you can only get that from an authorized rep.
Posts: 86 | From LA | Registered: Jul 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Mangosteen and astaxanthin. Are powerful antioxidents can be found in pill form...
keebler is amazing .. you may require hydroxylcobalimin rather than methyl if your body cant convert it ..
do you have bartonella anemia ? I also live on bee pollen ...and kavinace also put down this horse ... salt in diet ,vit c and licorice root and treatment have helped my adrenals
the temperature disregulation sounds like thyroid disfunction inwhich iodine or dessicated thyroid may help ..my temp was that low before starting bvt for lyme .
you still have the ability to learn and read so you got this if you need ...there may not be one pill or one modality or 1 doc that can put the egg back together ....consider it all..look into rife , mmj ,eleuthro, bvt(gave me great energy ) ,royal jelly and maca may help hormones and energy
maybe better luck in ca than tx but maybe other will pm you...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Lyme and co-infections are very complicated to sort out! We all feel challenged by the complexity of the puzzle.
One can edit posts by clicking on the paper with the pencil icon. Once corrected click on Edit Post.
What worked best for HPA axis, in our case, was Standard Process Hypothalamus PMG and BioPure Core. One of each at bedtime and on waking.
Adrenals and pituitary were supported long ago and maybe that's why Hypothalamus PMG worked so well. Or maybe there is something to be said for treating upstream for the trickle down effect (hypothalamus being the Master Gland)
While you care getting things checked it would be good to check for CBS Mutation.
If that is not possible, one can cut back on high content sulphur/thiol foods for 7-10 days to see if there is a difference in cognition.
As you know, it is a big job being a doctor in Lyme cases. There is so much to consider and it is helpful to the doctor to mention possibilities of tests/supplements so care can be coordinated.
Posts: 764 | From Northwest | Registered: Sep 2014
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