posted
I am recently diagnosed with neurologic Lyme by a LLMD. They think I have had it for years but my symptoms progressed rapidly after the birth of my second child and moved to my nervous system in the last year. I have been taking Intermezzo to help with sleep because I have neuro excitability and twitching/jerking. I have many transient symptoms, random shooting nerve pains, very infrequent head fog, head pains and this neuro irritation that feels like a flood of a noxious sensation in my body that comes and goes. When it's there it's intense! My LLMD wants me to try to control all of this prior to starting pulse antibiotics. I tried Neurontin 100mg and my occasional lucid dreaming was much worse, twitching worse, next day I suddenly had blurred vision and a severe headache that passed in about an hour. They advised me to cut dose in half, but my pill was a capsule. The next day I called in and due to holiday they were closed. Triage nurse said move on to Lamictal 5mg. The Lamictal label is so scary I haven't taken it. Any advice on helping these symptoms? Is it normal to delay taking antibiotics for symptom control?
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
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GretaM
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Your LL may be wanting to have good pain and seizure control in place before treating.
Especially with neuro lyme, when you first start treating with abx, the endotoxins released from the dying bacteria overload the brain, and an increase/worsening of symptoms is likely.
It is called a Jarish Herxheimer reaction. We call it, "herx" for short on here.
Sometimes, not always, an LL will really ease a patient into abx to try to avoid this herx.
I have neuro lyme, my doc eased me in, and I am grateful for it.
It is wise for your doc to want to find adequate pain and sleep control before so you have tried and true remedies if you should herx quite a bit when you start antibiotic treatment.
I have been treating just over a year, it took about 8 months for the twitching to go away. That was after treating both lyme and a coinfection called Bartonella.
Pretty soon, twitching will be a thing of the past for you as well. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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'Kete-tracker
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Starting on the antibiotics [abx] will induce what we call "hitting the dashboard" which simply means the abx is putting the brakes on the Lyme. But as a result, it usually worsens your Lyme [neurological] symptoms, especially at first.
Your LLMD may be trying to see what will work best for you in damping the most objectionable "neuro" symptoms so it will be bearable as you start on your road to recovery.
Nearly all of us have had to go thru this. The worst is usually about a day after starting the Lyme-killing abx. The 4th week is also sorta tough, but the 5th week typically brings some relief. But with the right protocols, you should be doing MUCH better after three to five 4-week cycles of treatment.
Lyme is slow to come on & slow to leave. It has to do with it's "growth cycle" being so ridiculously long (28 days!) & it's [limited] ability to evade any one abx ("monotherapy treatment")... which simply means your LLMD will most likely switch you to a different family of abx after you aren't making any further improvements on your 1st protocol.
Good luck to you! Many healthy months & years ahead... just not the next few months. :-/~
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Marnie
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My son had the opposite reaction to Lamictal...sudden weight GAIN...LOTS (not supposed to happen!)...and a VERY hard to rid fungal rash.
You could 1st try:
Now (Brand)50mg PLP/P5P twice a day.
That is the active form of B6. Inflammation lowers B6 levels and believe me...we need B6...a LOT!
We normally store about a 20 day supply in our liver! It is needed for over 140 enzyme reactions...and needed to convert glutamate to GABA (accelerator to brake), etc.
B6 + an enzyme called CBS -> taurine (lowers cholesterol) + GSH (= glutathione) + sulfate.
So...B6 helps us to MAKE glutathione by reacting with an enzyme called CBS and...
DHEA helps us to *recycle* glutathione. (But only 7 keto DHEA is advisable if anyone wants to go that route!)
CBS is impacted by cortisol levels - provided you don't have adrenal problems - genetic or exhaustion.
I like the Now brand of PLP/P5P because they include B2 (which helps absorb B6) and Mg.
Can get it on Amazon.
The other major nutrients in the "methylation cycle" are B12 (need stomach "intrinsic factor" to absorb it/take sublingual form), B9 = folic acid provided you don't have MTHFR gene defect - if not, folinic acid is a good form, and ZINC.
The balance between copper and zinc maybe off (with copper too high and zinc too low).
Normally woman have *slightly* more copper than men because women need copper, Cu, to make an enzyme called DAO which lowers toxic levels of
histamine(a lot in many foods) which is toxic to a fetus.
The levels of DAO go up 500 fold during pregnancy!
Men, have higher zinc levels.
It appears this maybe happening (in women who are more likely to become "autoimmune"):
Undermethylated ->
estrogen dominance ->
overstimulation of kidney aldosterone receptors
-> *increased copper levels*
-> sodium, copper and fluid retention.
“Copper can also accumulate in the thyroid gland, disrupting the conversion of thyroxine (T4) into triiodothyronine (T3).
T3 is the active form of thyroid hormone.
In situations of long term stress and zinc deficiency
T4 is converted into higher levels of the inactive form of T3, known as reverse T3 (rT3).
These two hormones, rT3 and T3, compete for uptake
creating a vicious cycle that results in higher than normal rT3 and low T3 levels.
The result is low T3 syndrome or Hashimoto's (Hypothyroidism).
Estrogen also directly contributes to thyroid disruption, particularly in cases of estrogen dominance.
It chemically exhibits a *similar structure to T3*, able to block thyroid receptors sites on the cell membrane, inducing a form of hypothyroidism.
Symptoms associated with hypothyroidism are fatigue, depression, brain fog, constipation, muscle cramps, excessive menstrual flow, intolerance to cold especially extremities, dry skin, dry, thinning hair, weight gain.
Since copper is so closely involved in estrogen, histamine and neurotransmitter metabolism, it's not difficult to see how an imbalance of this mineral has the potential to create havoc.”
Zinc and copper have a antagonistic relationship and both competitively inhibit one another for absorption.
In a healthy body the ideal ratio of serum Copper:Zinc is between 0.7:1 and 1:1.
In a recent pilot study undertaken by Stuckey, Walsh, and Lambert, into the effectiveness of targeted nutritional therapy in the treatment of mental illness,
serum Copper/Zinc ratio was seen as high as 2:1 in patients clinically diagnosed with mental illness.
A balance of the ratio is more important
than the amounts of either of these nutrients.
Zinc is crucial for the body when high copper levels are detected.
It assists in insulin production, the formation of progesterone, testosterone, cortisol, aldosterone, neurotransmitters, antibodies, hydrochloric acid and digestive enzymes.
It helps to protect the GIT lining, preventing intestinal permeability (leaky gut syndrome).
The best way to reduce copper in the body is
with Zinc.
It functions to promote excretion of copper through bile and inhibits intestinal absorption.
Bremner reported up to 40% reduction in liver copper in zinc supplemented sheep.
Manganese and *Molybdenum* have a synergistic action with Zinc
in the removal of copper.
(Bb uses our Mn.)
Vitamin C is another effective copper antagonist demonstrated in clinical studies by Finley and Cerklewski.
Getting some of the key nutrients back up may help alleviate several of the symptoms, but NOT clear the infection.
If you like red beets...they can help as they contain betaine...
"It is also a methyl donor of increasingly recognized significance..."
Doesn't a 28 day cycle shout something at you gals?
Besides a 13 moon, 28 - day calendar ;-)
[ 04-19-2014, 04:05 PM: Message edited by: Marnie ]
Posts: 9431 | From Sunshine State | Registered: Mar 2001
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
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Marnie-of course it does But men with lyme have a 28 day flare cycle also. And my 28 day flare is a week before my period. Then continues the flare during my period.
So I flare for 15-17 days a month Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Marnie
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Member # 773
posted
Edited above...see the moon cycle?
"Bacteria Ride the Tide: Moon's phases predict water quality at beaches
At many ocean beaches, full and new moons coincide with the greatest concentrations of bacteria in the water,
researchers in California have determined.
The new finding suggests that extreme tides, which occur fortnightly in synchrony with lunar phases, generate water conditions that could make swimmers sick."
Full and new moon maybe the best time to "interfere" with replication/reproduction?
[ 04-19-2014, 04:36 PM: Message edited by: Marnie ]
Posts: 9431 | From Sunshine State | Registered: Mar 2001
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Sammi
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There are some good replies here. In case you did not know, if you were infected during your pregnancies you should have your children evaluated. Tick-borne diseases can be transmitted through pregnancy and breastfeeding.
Posts: 4681 | Registered: Oct 2000
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GretaM
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Interesting! Thanks Marnie Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Thanks for the information! I do also have a positive heterozygous MTHFR A1298c. My LLMD said that he sees this commonly with Lyme and is going to research this further. My IGGs were high for CMV and HHV6 as well. I am on many supplements already but I am going to look into these. Greta- When you day he eased you in, how so? My plan is apparently a combo of omnicef 300mg BID, Minocin 100mg, BID and Septra DS BID week 1, then week 2 all the above plus Flagyl 500, then 1 week off, then repeat.
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
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But men with lyme have a 28 day flare cycle also. And my 28 day flare is a week before my period. Then continues the flare during my period. ![[Frown]](frown.gif)
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