posted
Well it's that time of year again, and this just blows my mind! Every year at around this time (Aug, Sep)I get a dousey of a symptom flare! It will usually last between 2 weeks and a month.
Doesn't seem to matter whether I'm actively treating or not
Same this year....In this case we've been treating Bart and Babs all year with several symptoms resolved and actually feeling fairly good with virtually NO flares...
And then, wham, same as every year. Big flare at this time of the year.
Can any of you relate to this? If so, has any of your LLMD's every had an explanation for this?
It does seem to correlate to when I got bit in the first place some 14 years ago.
Any thoughts?
Blessings.
-------------------- Thx, Dave (Now in VA.) Posts: 207 | From Lynchburg, VA. | Registered: Jun 2004
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I don't have an explanation for this, but my LLMD, who had lyme and Co and was disabled and successfully treated, says he notices a flare around Nov each year.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Thanks D48...I'm wondering if you and I have the same LLMD....I'll have to ask him about the Nov. thing at my next appt in 3 weeks.
All I know is this is bizarre...Wonder if it has something with a sort of automated immune response or something?
I've been sick as a dog for 3 days now (definite flare) not flu, etc. and it happens pretty much like clockwork at the same time each year, going back several years.
-------------------- Thx, Dave (Now in VA.) Posts: 207 | From Lynchburg, VA. | Registered: Jun 2004
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Me, me me! (Waiving my hand wildly in the air)
I have a major flair every single year around August and September. You can actually go back through my posts and see where I've posted about this around the first of every September for the past THREE years.
I started having a lot of fatigue about a month ago. This past week it's been debilitating and now I'm having a lot of other symptoms that I haven't dealt with in a long time. This morning it's heart palps.
I also want to add that I was doing really well and have been for several months now. March has also been a historically bad month for me too.
My theory is that the bugs are just really sensitive to external changes like weather and barometric pressure and altitude. I think they can somehow sense these things and they come out to "play". I'm trying to stay positive about it and tell myself that it's a great opportunity to kill the ones that have been hiding - still doesn't make it pleasant though.
Anyways, you're not crazy and you're not alone. My bet is that in the next month or so we'll be seeing a lot more Lymies going through the same exact thing...
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Every major downturn I've taken has started with a flare in late August to September -- pick the year; The year of the gut; the year of the eyes; The year of the light sensitivity; the year of the CFS ...
Also, I get a milder flare in early spring.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
PS -- My theory is that there is some life cycle programmed into the bugs, just like the seasonality of the ticks.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I don't know how you can keep track of them/keep them straight. I flare all the time with no explanation, so if I were to flare the same time as last year, I really wouldn't notice them out of all the other flares and it wouldn't be a surprise.
Now, if I only flared ONCE a year, the same time every year, then maybe I'd notice... but I flare/herx quite a lot unfortunately.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
It's funny that you mentioned this. I crashed a little recently but am running Omnicef, Mepron, Levaquin, and Rifampin concurrently so that doesn't help
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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That's just it for me. I've gone virtually all year with hardly any real flares and it was similar last year, except that in Sep. last year I got very sick from a flare that lasted about 3 weeks.
I then went back and realized that almost every year in Aug / Sep I would get real sick for a time, whether on treatment or not
-------------------- Thx, Dave (Now in VA.) Posts: 207 | From Lynchburg, VA. | Registered: Jun 2004
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posted
Happens to me every fall, but mine can last up to 3 months.
-------------------- dar Posts: 95 | From michigan | Registered: Sep 2007
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Same with me Dave - I hold pretty steady symptom wise, but when fall and spring hit all hell breaks loose. For me it usually lasts about 6 weeks or so...
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
When I relapse, it is usually June or early July. This happens consistently, and I always wondered, why summer?
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Have you been checked/treated for Babesia and Malaria?
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Chart the temperature AND barometric pressure *daily* for your area for several months along with "yes" lyme symptoms very present or "no" symptoms not present.
I highly suspect you will see a trend.
Barometric pressure impacts nitrogen and oxygen...ask any deep sea diver (bends).
I would love to get my mits on this old information:
"RELATION OF THE OXYGEN AND NITROGEN CONTENT OF CEREBROSPINAL FLUID TO BAROMETRIC..." Cunningham et al. Am J Physiol.1933; 107: 164-167
I found this interesting:
"I have a primary metabolic disorder (urea cycle disorder) that affects the ***nitrogen and oxygen*** in the blood.
Low barometric pressure raises my nitrogen which then triggers problems with the brain and oxygen.
I have found articles written about it for military personnel."
Haven't chatted with you in a while. I'm actually being treated specifically for WA-1 right now.
This after two years of standard Bb treatment and then a one year break until last Sep. when big flare (I describe above) happened.
Ironically, when I went back to LLMD my WB this time was neg, but I tested positive for WA-1.
He decided to still treat me for Bb again, Bart, and Babesia and do it in stages. Right now we're just treating the Babs.
Again, this flare has come out of nowhere because, other then initial herx when I stated treatment again at first of the year, I've been fairly symptom free.
Strange that it happens the same way and time of the year.
-------------------- Thx, Dave (Now in VA.) Posts: 207 | From Lynchburg, VA. | Registered: Jun 2004
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Interesting (HBO and malaria = "Babesiosis: malaria mimic"):
2008
"Hyperbaric oxygen prevents early death caused by experimental cerebral malaria.
Blanco YC, Farias AS, Goelnitz U, Lopes SC, Arrais-Silva WW, Carvalho BO, Amino R, Wunderlich G, Santos LM, Giorgio S, Costa FT.
Department of Microbiology & Immunology, State University of Campinas, Campinas, S�o Paulo, Brazil.
BACKGROUND: Cerebral malaria (CM) is a syndrome characterized by neurological signs, seizures and coma.
Despite the fact that CM presents similarities with cerebral stroke, few studies have focused on new supportive therapies for the disease.
Hyperbaric oxygen (HBO) therapy has been successfully used in patients with numerous brain disorders such as stroke, migraine and atherosclerosis.
...
Cumulative survival analyses demonstrated that HBO therapy protected 50% of PbA-infected mice and delayed CM-specific neurological signs when administrated after patent parasitemia.
Pressurized oxygen therapy reduced peripheral parasitemia, expression of TNF-alpha, IFN-gamma and IL-10 mRNA levels
and percentage of gammadelta and alphabeta CD4(+) and CD8(+) T lymphocytes sequestered in mice brains, thus resulting in a reduction of blood-brain barrier (BBB) dysfunction and hypothermia.
CONCLUSIONS/SIGNIFICANCE: The data presented here is the first indication that HBO treatment could be used as supportive therapy,
perhaps in association with neuroprotective drugs, to prevent CM clinical outcomes, including death.
PMID: 18769544 PLoS One. 2008 Sep 4;3(9):e3126
HBO PLUS Pycnogenol?
Recommended dose (from a MD is 1mg per pound of body weight once a day). This doctor also recommends it for all his late-onset diabetic patients.
For info. on Pycnogenol if interested (must come from a good, reputable source):
If you get into coconut oil research and are freaked about the lung damage links, look very closely at HOW the researchers administered CO to mice.
IV isn't good! It was also not a good idea to give a bismuth compound IV either to treat lyme although Ranitidine Bismuth citate taken ORALLY can rid all forms of Bb from the GI system.
Different ball game entirely...oral vs IV for some things.
We can (and do) use our skin to absorb things...nicotine patches, nitroglycerine patches,birth control patches, etc.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I want to add that I just moved to Colorado from Mississippi about a month ago. Having lived at about 200 feet above sea level my entire life and then going to over 6,000 feet above sea level is definately having an impact. There just isn't near the amount of oxygen here
My husband and I actually drove up Pikes Peak about 3 weeks ago - Pikes Peak is 18,000 feet in the air and you're literally up in the clouds.
I felt fine when we started, but about 3 miles from the top I started feeling sick, and I mean SICK. My muscles started twitching, I felt like stuff was crawling around up under my skin, I felt lightheaded, and I started sweating - it was awful.
Let me tell you, there is nowhere to turn around! My poor husband just held my hand and he was like, "Babe, we have to keep going."
By the time we reached the top I had a full blown panic attack, and I haven't had one of those in ages. But I was determined to get my picture taken at the top! I jumped out of the car and I'm gritting my teeth and I'm telling my husband, "Hurry up and take a damn picture so we can get off this damn mountain!!" LOL...
It was awful! It took about 3 days to recover from that, but truthfully I haven't been the same since....I've been beating back one symptom or another since then.
I know that I always flair this time of year anyways, but add to that moving to a completely different altitude with completely different weather, and it's really screwed me up. Hopefully my body will ajust soon.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Yup...absolute need for more oxygen.
Link to sodium:
"Hypoxia increases persistent sodium current in rat ventricular myocytes."
(Hypoxia = low oxygen level. Myocytes are muscle cells.Ventricular refers to the 2 larger heart chambers at the bottom of the heart)
Sodium -> INTO the cells -> hyponatremia (low blood level of Na - extracellular goes to intracellular) -> panic attack?
"...suggesting that amiloride derivatives can reduce Ca2+ loading by blocking Na+ entry through Na+ channels, an action that may in part underlie their ability to
prevent hypoxic Na+ and Ca2+ loading.
CONCLUSIONS: Na+ influx through the voltage-gated Na+ channel is an important route of hypoxic Na+ loading, Na(+)-dependent Ca2+ loading, and reoxygenation hypercontracture in isolated rat cardiac myocytes.
Importantly, the Na+ channel appears to serve as a route for hypoxic Na+ influx after myocytes become inexcitable."
Amiloride is a Rx that inhibits Na re-absorption, but in lyme hyponatremia may already be a problem. Amiloride can trigger hyperkalemia (high potassium)...which is dangerous.
in the inner medullary collecting duct." (kidney).
Bottom line...looks like hypoxia triggers the influx of Na and Ca.
Looks like having sufficient O2 would be beneficial since Bb appears to need Na and Ca to go into the cells (and out).
Hypothermia is a defensive move...reduces the demand for oxygen...available oxygen is delivered to the most vital organs. (Think of what happens when someone falls thru the ice and how they can survive much longer without oxygen at very cold temperatures.)
How do we euthanase our pets? Usually with high levels of potassium.
However...
"Euthanasia by hypoxia using nitrogen. A review after four years of operation involving 20 500 animals."
Nitogen can displace oxygen (in a chamber).
Research what happens in the "bends" re: nitrogen when scuba divers come up too fast...and need hyperbaric treatments.
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