lfran
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Posts posted by lfran
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I posted earlier today that a few days after starting methylfolate supplementation, my DS10 pretty much ended nighttime wetting, which has been a continual problem since he was very little. Now he is completely dry most mornings, with an occasional very very tiny spot. He is MTHFR C677T homozygous, so we know he has methylation and folate issues, but here's this article, titled Decreased Vitamin B12 Levels in Children with Nocturnal Enuresis, that I thought was quite interesting. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3302062/
I posted about this earlier, in the MTHFR post. It seems that several of our kiddos are turning up with MTHFR issues. Since so many of our kids also have enuresis, and since there may be a link between the two, I am hoping that as more of us take the MTHFR test, we may uncover an underlying metabolic issue that is behind some of our kids' symptoms. My DS10 also dropped all of his anxieties and debilitating fears shortly after we started this supplementation a couple of months ago.
When I posted earlier, others reminded me that this supplementation should only be done after testing and under a doctor's care. I agree completely, although finding a doctor that has experience with this is not easy, so I still want to post about our good experience in the hopes that it may help others.
I found this so far:
"Nowadays Desmopressin, a synthetic analogue of Vasopressin, available since 1980, is used. Desmopressin, or dDAVP, is created by de-aminating the cysteine residue (which prolongs its activity) at one end of Vasopressin and replacing L-arginine with D-arginine (which reduces the vasopressor activity). In so doing this renders dDAVP a potent antidiuretic with reduced vasopressor activity and a prolonged half-life of 1.5-3.5 hours compared to about 12 mins for Vasopressin (60). The time to maximal biological activity following ingestion is approximately 60 mins (61). Its rapid onset of action means that it is often recommended where a quick response (such as going on overnight camps, sleepovers etc) is needed."
Will keep digging since yup, we are in this boat too.
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One more thing -- there is a presciption form of methylfolate called Deplin. It is prescribed as an adjunct to anti-depressants, as it seems to boost their effect. It comes in 7.5 and 15 mg dosages. It is considered a "medical food". So psychiatrists and psychologists might be on board, as well.
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We started out with just methylfolate, then saw that methylguard plus has methylated forms of other b vitamins, so added that as well. DS10 is doing great with it.
As I posted earlier, shortly after starting it, nighttime wetting basically ended (DS10 had never been dry since babyhood). Also, major anxiety/fears are gone. His teacher also noted greatly improved focus, and noted the date on her calendar. She didn't tell me until 3 weeks after -- when I checked, her notation was about 4 days after starting the methylfolate. It has been about 2 months now and we all see the improvements in focus.
I'd love to get more data points on this and am hoping more people on this board will test their MTHFR status and/or start supplementing with methylated b vitamins and then post their results.
b
Hi friends,
A couple of questions because I'm so easily confused by all of this.
Lfran- why both methylfolate and methylguard plus?
Why does Dr. Jones recommend regular multivitamins or regular folic acid if those with mutation can't concert it?
Michael Tampa- Were you the one who posted that supplementation is NOT lifelong? That muscle testing indicated you needed methylfolate and then no longer did? How do you monitor that without muscle testing? Any danger to taking it when you don't need it or just pee it out/waste of $$ risk only?
Thanks!
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Thanks!
Here's a link to the SUNY study: http://www.downstate.edu/news_releases/2011/news_release_full26.html
This is NOT the MTHFR DNA test. This is to test the anti-Cerebral Folate Receptor Abs.
Thanks for all the info!
A quick follow up on the SUNY test -- is it something other than the DNA test showing the MTHFR DNA? When I looked for it online, that's what it seemed like to me. We had that done via Labcorp, through insurance, so I thought the SUNY test might be something different.
-- lfran
My DD7 is heterozygous C677T as well. The treatment for this is lifelong supplementation with methylfolate. Most of us take a multivitamin or eat cereal fortified with folate. Or when pregnant, we're told to take extra folate, as a deficiency is associated with neural tube defects in developing babies. For people with this genetic mutation, our bodies can't convert the folate in the mutlivitamin/cereal/other foods properly. So depending on how severe the mutation is (if you're hetero vs homozygous), your body can only use 50-70% of the folate in your body (if you're heterozygous) or as little as 10% of the available folate (if you're homozygous).
The body turns folate into methylfolate. Methylfolate, in combination with B12, converts homocysteine back into something called methionine, which is then converetd into ATP (cell energy) and SAMe (which leads to seratonin). This is a circle - one things converts into another over and over. It's called the methylation cycle.
Without methylfolate, not only does your body not recycle homocysteine, it also doesn't make this methylation cycle turn very well, thus reducing your body's energy and seratonin. The build up of homocysteine leads to heart disease, stroke, macular degeneration and a host of other issues. Here's a good overview that's easy to understand http://www.lef.org/protocols/heart_circulatory/homocysteine_reduction_01.htm And as Nancy said, an increase in homocysteine can also lead to a deficiency in raw materials needed to make glutathione - the king of antioxidants that help your body shed damaged cells and toxins.
So all in all, high homocysteine and low amounts of bio-available methylfolate is a bad thing for many reasons. When you have this gene mutation (the gene is called MTHFR and the mutation I'm talking about is the C677T - the A1298 has different implications) - the treatment is to supplement with methylfolate - a type of folate that's been pre-converted - or methylated- into what's needed to complete the methylation cycle.
When you first start, you want to start slow. Think of a dam of water that's built up. You don't want to open the flood gates. You first want to start a slow drain. So for my DD7 who's 47 lbs and has neuropsych symptoms, we started at 200mcg of methylfolate and did this for 2 weeks. Because it's hard to find such a low dose, we bought Amy Yasko's liquid methylfolate called methylmate (http://www.holisticheal.com/methylmate-b-nutritional-supplement.html) We built up to 3 drops and now when the bottle is gone, we'll switch to a pill in the 800mcg range. Once my DD had been supplementing for about a month, she felt better - the mood swings stopped. But she was still complaining of periodic fatigue. So we added the methyl form of B12, aka methylcobalmin. Together, the methylfolate and methylB12 help her efficiently complete the methylation cycle, helping the body create cell energy, seratonin and reduce/recycle homocysteine.
Our LLMD understands methylation and helped us do the testing and discussed our plan. But some of this I've done on myself as well, as the gene likely comes from me but I don't have a supportive doctor to do testing (that's in the list once we get the kids out of treatment). I think for our kids, who have infection as well as a high probability of having "broken" systems such as methylation etc, having an integrative doc on board to help is a really really good idea. But if it's just impractical, I think you can read up and do some things on your own, so long as you take it slow and balance things. Too much of any single supplement can cause problems of its own.
Tami - I'll PM you the name of an integrative in southern CT who knows this stuff inside and out.
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OB gyns are on-board. My new gyn knew all about it. Cardiologists are coming on board, as high homocystein can lead to cardiovascular problems. As for the others, well, I think they don't know much about it.
I should know more later today, after another medical call. Will post more then.
for those in the know -- how much of a mainstream medicine concept is this? i have an appt with ped tomorrow to discuss testing -- he is generally open and a good member of our team, although not the person who 'treats' pandas. i'm trying to get it through him so more likely for insur coverage but curious if you can give me an idea of how out there it might be -- keep in mind, we treat with homeopathy -- so i'm okay with different paths and perceptions -- just trying to get an idea of where it might be. thanks.
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Thanks for all the info!
A quick follow up on the SUNY test -- is it something other than the DNA test showing the MTHFR DNA? When I looked for it online, that's what it seemed like to me. We had that done via Labcorp, through insurance, so I thought the SUNY test might be something different.
-- lfran
My DD7 is heterozygous C677T as well. The treatment for this is lifelong supplementation with methylfolate. Most of us take a multivitamin or eat cereal fortified with folate. Or when pregnant, we're told to take extra folate, as a deficiency is associated with neural tube defects in developing babies. For people with this genetic mutation, our bodies can't convert the folate in the mutlivitamin/cereal/other foods properly. So depending on how severe the mutation is (if you're hetero vs homozygous), your body can only use 50-70% of the folate in your body (if you're heterozygous) or as little as 10% of the available folate (if you're homozygous).
The body turns folate into methylfolate. Methylfolate, in combination with B12, converts homocysteine back into something called methionine, which is then converetd into ATP (cell energy) and SAMe (which leads to seratonin). This is a circle - one things converts into another over and over. It's called the methylation cycle.
Without methylfolate, not only does your body not recycle homocysteine, it also doesn't make this methylation cycle turn very well, thus reducing your body's energy and seratonin. The build up of homocysteine leads to heart disease, stroke, macular degeneration and a host of other issues. Here's a good overview that's easy to understand http://www.lef.org/protocols/heart_circulatory/homocysteine_reduction_01.htm And as Nancy said, an increase in homocysteine can also lead to a deficiency in raw materials needed to make glutathione - the king of antioxidants that help your body shed damaged cells and toxins.
So all in all, high homocysteine and low amounts of bio-available methylfolate is a bad thing for many reasons. When you have this gene mutation (the gene is called MTHFR and the mutation I'm talking about is the C677T - the A1298 has different implications) - the treatment is to supplement with methylfolate - a type of folate that's been pre-converted - or methylated- into what's needed to complete the methylation cycle.
When you first start, you want to start slow. Think of a dam of water that's built up. You don't want to open the flood gates. You first want to start a slow drain. So for my DD7 who's 47 lbs and has neuropsych symptoms, we started at 200mcg of methylfolate and did this for 2 weeks. Because it's hard to find such a low dose, we bought Amy Yasko's liquid methylfolate called methylmate (http://www.holisticheal.com/methylmate-b-nutritional-supplement.html) We built up to 3 drops and now when the bottle is gone, we'll switch to a pill in the 800mcg range. Once my DD had been supplementing for about a month, she felt better - the mood swings stopped. But she was still complaining of periodic fatigue. So we added the methyl form of B12, aka methylcobalmin. Together, the methylfolate and methylB12 help her efficiently complete the methylation cycle, helping the body create cell energy, seratonin and reduce/recycle homocysteine.
Our LLMD understands methylation and helped us do the testing and discussed our plan. But some of this I've done on myself as well, as the gene likely comes from me but I don't have a supportive doctor to do testing (that's in the list once we get the kids out of treatment). I think for our kids, who have infection as well as a high probability of having "broken" systems such as methylation etc, having an integrative doc on board to help is a really really good idea. But if it's just impractical, I think you can read up and do some things on your own, so long as you take it slow and balance things. Too much of any single supplement can cause problems of its own.
Tami - I'll PM you the name of an integrative in southern CT who knows this stuff inside and out.
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Please post or PM me with more info on the SUNY test. DS 10 is C677T homozygous, and I would like to learn all that I can.
However, I want to add that since finding this out, I have been giving him methylfolate and methylguard plus, both from Thorne, and have seen two major symptoms DISAPPEAR. One is nighttime wetting and the other is his extremely high anxiety. The wetting is down to about 1 or 2% of what it had been (a couple of spots now and then) and it looks to me like his major fears are just...gone. Also just saw a research paper linking low B12 and low folate to nighttime wetting, so I am pretty excited that this suppplementation may have fixed this problem for good.
I will post more later, but wanted to get this info out there. PLEASE don't let me be jinxing this by posting.
Below info from Dr. Jones' website will explain. You should see an integrated MD who knows how to treat MTHFR. You may want to check B, homocysteine, and glutathione levels. There is also a test you can take to check anti-cerebral folate abs. This is part of a research study at SUNY Medical Center. The cost is $100 (insurance will not cover). If you'd like more info on this study let me know.
From Dr. Jones Kids website:
"MTHFR is a common genetic variant that causes a key enzyme in the body to function at lower than normal rate. This can lead to a variety of medical problems, when people with MTHFR are exposed to more toxins than their bodies can handle. There are over 50 known MTHFR variants, but the two prime variants are called 677 and 1298, the numbers refer to their location on the gene. The routine lab test for MTHFR variant only reports on 677 and 1298 as these are the most studied.
"The 677 variant is associated with early heart disease and stroke and the 1298 variant with a variety chronic illnesses. The MTHFR is reported out as heterozygous or homozygous. If you are heterozygous that means you have affected gene and one normal gene. The MTHFR enzyme will run at about 55% to 70% efficiency compared to a normal MTHFR enzyme. If you are homozygous then enzyme efficiency drops down to 7% to 10% of normal, which of course makes a huge difference."
"The worst combination is 677/1298 in which you are heterozygous to both anomalies. Many chronic illnesses are linked to this anomaly. 98% of autistic children have an MTHFR anomaly. Fibromyalgia, irritable bowel syndrome, migraines, are all conditions associated with MTHFR anomaly."
"MTHFR can make you susceptible to illness because the pathway is the primary source of glutathione production in the body. Glutathione is the body's primary antioxidant and detoxifier. People with MTHFR anomalies usually have low glutathione, which makes them more susceptible to stress and less tolerant to toxins."
"As we age MTHFR problems get much worse due to the accumulation of toxins and the cumulative effect of oxidative stress, which ages our bodies."
~~~
Non mutated MTHFR is one of the leading regulatory enzymes of homocysteine metabolism. Homocysteine metabolism is an extremely important factor of our metabolic systems. This process touches many aspects of our general health and is therefore very important.
The MTHFR Mutation is a defective enzyme that hinders this process. The mutation of the MTHFR gene is directly related to hyperhomocysteinemia (high or elevated levels of homocysteine).
High levels of homocysteine can be attributed to many conditions such as:
The condition can lead to high rates of dementia /Alzheimer`s due to a decrease in vitamin B-12.
High homocysteinemia can lead to coronary artery disease, common carotid atherosclerosis other Vascular Diseases.
Complications in Pregnancy Due To Neural Tube Defects.
Atherosclerosis
Rheumatoid Arthritis
Downs Syndrome
Alcoholism
Osteoporosis
Neuropsychiatric Disorders
Non Insulin Dependant Diabetes
Early Pregnancy Loss
Spontaneous Abortion (Viable Fetus)
Placental Abruption, Low Birth Weight
Other Conditions
MTHFR mutation can be homozygous (2 copies) or heterozygous (1 copy), with more people being heterozygous and carrying only one MTHFR mutated gene. Compound heterozygous (one copy of each mutation). Homozygous, of course, can cause more issues and become more serious.
It`s a fairly easy thing to test for by checking homocysteine levels in the blood.
Treatment consists of simple vitamin supplements --- FolaPro L-methyl tetrahydrofolate by Metagenics, OR, 5 tetrahydrofolate or methyl folate.
Longevity Plus, H.R. T. Plus with 5-tetrahydrofolate.
Life Extension, optimized folate (5-MTHF).
OR prescriptions like:
*Deplin/ 7.5 mg l-methylfolate
OR
*Metanx-L methyl folate calcium (as Metafolin) 3 mg, Pyridoxal 5` phosphate 35 mg, methylcobalamin 2 mg.
OR
Methyl B-12 injections
The vitamin supplementation is lifelong. After childbirth you may switch from prenatal to a women`s multivitamin.
See a specialist to discuss whether you are a candidate for Lovenox. Also, you may consider having a FULL antiphospholipid antibodies panel run.
Many MTHFR patients also have Antiphospholipid Syndrome. If you have both, you are a likely candidate for Lovenox (injections of low molecular weight heparin) throughout a pregnancy to prevent clotting.
MTHFR mutations interfere with the body`s ability to absorb folic acid. Folic acid deficiencies for babies can cause neural tube defects like spina bifida.
In addition, lack of folic acid can cause clotting-related problems. Since the teeniest, tiniest blood vessels are in the uterus, a female can have microscopic clots that don`t harm them, but cut off the blood supply to the embryo/fetus. This can cause implantation problems, m/c, or even stillbirth. So properly treating your MTHFR is critical.
MTHFR is one of several different kinds of inherited thrombophilia. (Antiphospholipid Syndrome is acquired thrombophilia.)
Please be sure to have your parents and siblings tested for MTHFR mutations as well. If positive, then they should discuss taking baby aspirin and additional Folgard as well (one Folgard per mutation.)
During pregnancy adding extra folic acid is suggested beyond the 800 mg.
Children will need a children`s multivitamin and later extra folic acid, too.
There is controversy as to the importance of homocysteine levels when it comes to MTHFR mutations.
MTHFR causes folic acid deficiency, which causes elevated homocysteine levels, which causes clotting problems, which causes infertility or miscarriage.
MTHFR causes folic acid deficiency, which causes clotting problems, which causes infertility or miscarriage which may or may not cause elevated homocysteine levels.
Homocysteine levels may be checked. Homocysteine levels (particularly in young women) are not an accurate predictor of clotting troubles.
Baby aspirin is a blood thinner (relatively mild). Lovenox (low molecular weight heparin) is an anticoagulant (slows clotting.) They have two very different functions in the body. Your doctor may or may not want you to use both.
AVOID Laughing gas/Nitrous Oxide - Nitrous oxide uses up vitamin B-12 can cause severe problems or death in people with MTHFR Disorder.
AVOID Bactrim DS- In pregnancy it is associated with increased incidence of cleft lip. Otherwise the system is depleted of Vitamin B-12.
AVOID SamE, an over the counter product as this S-adenosyl-methionine can further inhibit MTHFR.
C77TT is associated with an increase risk of esophageal cancer.
MTHFR Disorder is associated with an increased risk for postmenopausal breast cancer, schizophrenia, anxiety, bipolar disorder, migraines, and strokes.
It effects of seizures and medications used to treat them.
There is a reduced risk of non-Hodgkins lymphoma and acute lymphocytic leukemia in adults.
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It can be extremely dangerous for those with the MTHFR mutation, and several of these kids are showing up with that mutation. Pediatric dentists like to use nitrous oxide for young kids, so you may have some resistance from your dentist. Our dentist uses it until the kids are around 9!
What is the reason for the no nitrous oxide? I'm not sure what they are using. I will have to call them.
It is not the silver mercury fillings.
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Just a thought, vis a vis the B vitamins.
Several of us have gone ahead and tested for the MTHFR defect and come up positive. If this is positive, the "regular" b vitamins won't help -- you need the methylated form, which can be either by prescription or from places like iherb.com and other online vitamin suppliers (no prescription needed).
Was pretty shocked when my DS10 turned up homozygous for the MTHFR mutation, but supplementing with these special B vitamins has made a world of difference in his anxiety and other problematic symptoms. (Hasn't helped the tics, though, sadly).
Lyme has a roughly 4 week life cycle. Quite common to see a spike in symptoms every 4 weeks when the bacteria replicate.
Zith might be helping, but generally, you use a combo of abx - one extracellular and one intracellular. Zith would cover the intracellular, but LLMD will probably add an extra as well. If DS has all his adult teeth, the abx of choice is doxycycline. But you'll need to be careful during the summer months, as doxy causes sun sensitivity and you can get sunburn very very easily (like in minutes).
After a period of time, many LLMDs either rotate the abx combo or add a cyst-buster like tindamax or flagyl or herbs. But that's a discussion for later. For now, focus on detox and supplements like magnesium, zinc, the Bs, and a good antioxidant - alpha lipoic acid (tho I'd rule out metals first), or I like resveratrol. Something for liver support is good too, as you'll be making it work hard with all those abx and bacterial toxins. We use milk thistle for that.
Chin up. You know now. It will be a long journey. But it will be a productive one. You can stop running in circles and having surgeries that don't take care of the problem. You can get to the root. When I got DS's dx, I crashed. I was so very exhausted from all the Pandas stuff and had a lot going on personally. But 20 months later, my DH and I can't believe how far we've come and how good "normal" is starting to feel. The lyme dx was a blessing in disguise.
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And a couple of docs, including the Europeans,think 58 is quite significant.
Well, I just got my Igenex results. Let me start by reiterating my previous labs.
Had WB done by Clinical Lab Partners/through Dr. B. in CT -- they actually do report 31/34 and I tested positive for band 34. They said the don't see this come up often and usually indicates chronic infection. Was surprised they actually knew that to be honest. In any case they suggested I go to LLMD. I have an appt. on May 11th. However, I did a phone consult with LLMD and he thought based on my symptoms over 15+ years that it was evident we were dealing with lyme and/or coinfections. He told me if I needed more convincing I could have the CD57 done. So, I did. CD57 -- 20 Low. Then I went ahead and ponied up the $200 for Igenex WB. Not sure why, guess I just needed to be sure. Here are my results:
IGM Result Positive
**23-25 IND
**31 +
**41 +
66 +
**83-93 +
IGG Result Negative
**31 IND
**39 IND
**41 +
58 ++
**83-93 IND
I've researched the bands, I know the 23-25, 31, 93, 39, etc. are specific and significant. Somehow I still am trying to convince myself it's something other than Lyme. I think I'm nuts. This wasn't part of my plan. Frankly, I'm just pissed off~
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My DS10 is homozygous for the C677T methylation mutation and after starting him on NAC and especially methylguard plus (both over the counter), we have seen the fears and intrusive thoughts go waaaaaaaay down.
I think methylation is the key for some of these kids. SOOOO thankful for this forum and the suggestions to test for the mutation -- a $50 test, covered by insurance. Since methylation has implications for other health issues, am doubly glad for the insight.
My DD7 had intrusive thoughts. She initially responded to abx and over time, her immune markers for chronic infection went way down (C3d immune complexes went from 20s to 50s to 90s and then 8 mos of abx - zith+bactrim - brought it back to the 20s last time we tested). We were never sure what type of infection she had. But the intrusive thoughts, the negative thoughts about herself stayed.
ERP and CBT did help - and I strongly encourage you to stay with therapy - but make sure it's ERP and not just talk therapy. There should be exposures you're working on in the session and at home.
The other thing that helped was looking at the way her body metabolized (i.e. methlyated) certain nutrients. An SSRI slows down the speed at which the neuron sucks up seratonin between the synapses. The seratonin between the synapses is like grease between ball bearings. Suck it up too quickly and the ball bearings scrape against each other instead of gliding. Thoughts gets stuck when there's not enough grease. But - and this is my opinion - using an SSRI assumes that there's enough seratonin in the system but that it's being sucked up too quickly. What if there isn't enough seratonin in the system to begin with? You can slow down the re-uptake, but you could have an underlying deficiency instead of or in addition to the too-rapid re-uptake. Dopamine is also critical to some of these neurological conditions. An SSRI doesn't address that part of the equation.
I know my DD has an MTHFR mutation, so she doesn't process/metabolize/methylate folic acid into methylfolate, which is needed for the body to eventually make seratonin. So that's one strike against her. She's also a picky eater with poor nutrient intake. So she's not taking in the necessary ingredients. Strike two. She may have other genetic mutations that make her production of neurotransmitters less efficient. So maybe strike three.
On the hunch she had a seratonin and/or dopamine deficiency, I started giving her tryptophan (a seratonin precursor) and tyrosine (a dopamine precursor). This bypasses some of her diet and genetic hurdles and puts more seratonin and dopamine into the system. I think if it as giving her turkey in pill form because she won't eat it in its natural form. (rationalization, I know). The transformation has been amazing. She rarely has intrusive thoughts now and relies only on ERP and CBT skills to face any anxiety that crops up briefly.
I don't know how your therapist or neurologist would feel, but it might be worth discussing. Not necessarily in place of but maybe in addition to the prozac.
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Just as a side note, the side effects for some antibiotics (especially amoxicillin) list hallucinations as a side-effect. They are rare, but they are reported. So....for some, high-dose antiobiotics may be contributing.
My son also experienced hallucinations. It was very hard to watch. He was convinced that someone was living in the wall and tried to dig them out with a spoon. This was a bit worrisome because he was digging by an electrical outlet. He also was convinced that someone had been to our house before and became very agitated when the person said they hadn't. He sees monsters looking at him all the time. My ds at the worst of it spoke nonstop to no one. We could not get him to stop talking he did this for days, months. I had no idea what he was talking about. Since his IVIG these behaviors faded. I am sure others on the board know more about this than I do. I was told you can still see symptoms fade up to a year after the IVIG. On Dr. K's website he states that 9% of patients experience hallucinations.
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Foot pain in the morning is often a sign of Bartonella, which is a very common lyme co-infection. Often treated with rifampin- but make sure you monitor liver function frequently if on rifampin.
Gruelling fatigue can be low thyroid, as well as many other things. If low thyroid, it's pretty easy to treat. I felt completely better within a week of starting thyroid treatment (like an epiphany, really), although my doc told me it shouldn't have happened quite that fast. You don't even have to be super hypothyroid for the fatigue to hit.I fell asleep in my dinner plate almost every night before it was treated.
Hope you feel better soon!
I'm sorry, you have been through a lot :-(Are you saying you hold a job outside the home, also go to school, and have children ill? And yourself?Man almighty, that is a lot.All I can really offer is that yes, chronic fatigue has been a large part of my Lyme disease. Before it started progressing in me, I was a business executive in an extremely busy and stressful place- often on the phone from 7 am to 7 pm, I exercised regularly, and a Mom to 1 child (now 14). I was social, had some close IRL girlfriends.Over the years, looking back, I see how I started completely simplifying my life- quit my job 5 years back, I got anti-social, lost contacts- fun was something I couldn't seem to do-I didn't really want to go anywhere.I blamed it all on myself, I was a failure somehow, weak, getting old, lazy, not realizing I was plainly utterly exhausted ALL the time.And of course I had no clue I had chronic Lyme and Bartonella.You might want to have a full thyroid panel run, make sure all is okay there, B-12 and solid vitamins help, but lastly...If it is infection driven, like mine, it won't get better unless treated properly.Hang in there, sending you good thoughts---I understand.
I actually work mostly from home, but I run my own business the last 6-7 years and it's more than full time. Make my own products, ship the items, manage a website, do the book keeping, ordering, customer service, etc. --- then I go to school full time 4 classes, and then I have the sicko kiddo and myself. It's a lot, but until this surgery I as able to manage it. I know I keep referencing the surgery, but it's really not the problem. It just seems that having it knocked the wind out me, I just haven't been strong enough to hack anything else since. I was in a lot of pain before the surgery and feel relieved that all of that stuff is gone (my ovary was attached to my intestines by adhesions, this was my 3rd surgery in 15 months for endometriosis, fibroids, ovarian cysts, etc.). After about a week I noticed I was getting tired, but now it's just gotten worse each day. No signs of infection or anything like that, and I'm on Augmentin for a sinus infection, so that should have taken care of it if there was any...just aches, pains and exhaustion.
I have missed quite a few holidays with the family in the last year due to being sick and truth be told I was relieved. I also have become anti-social, not because I don't want to, it's just too much effort. Sometimes just getting dressed up and putting on make up seems like too much work. It's really not like me either, I'm a pretty happy person, I laugh all the time, I WANT to be social, but damn it if not just too tired.
Oh, and I have this twitching that is getting REALLY bad. At first it started out to be quirkly and once every few days, then once a day or so, now it's all day long several times and hour. Twitching on my face, in my hand, my thigh, my back and even my side near my ribs. I have read that twitches and spasms, etc. are Lyme related, and they are not painful, but man they are annoying.
Vent anytime! I feel as if I'm always the one here asking for advice/ input, and I don't have as much to offer.But vent away. We all need to get it off of our chest
Thanks, Colleen. It really did feel better just to get that out. I try not to complain to my hubby too much, I feel bad especially with the drama my son's illness causes in the house. He came home tonight with my favorite dinner. I hadn't even said a word about how I was feeling, didn't even mention dinner, he just brought it home. I guess he can tell I'm pretty worn down, it was a really nice surprise though. Needless to say, I'm trying to suck it up and not cry about not feeling good, so it felt good to have a little pity party for a few.
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Untreated hypothyroidism (high TSH) can cause killer fatigue -- zombie state fatigue.
It's pretty easy to treat -- daily levothyroxine (taken in the morning), with frequent testing until the right dosage is found. Proper treatment of my thyroid CHANGED MY LIFE. Whenever my TSH creeps up much over 2.0, I feel it.
You just have to be careful that you don't overtreat and get pushed into *hyper* thyroid state. But that's also pretty easy to monitor -- only happened to me once in 5 years, and that was when I lost a lot of weight and hadn't had my dosage adjusted to compensate,
Ugh now I have nyself worked up about the TSH. Normal was under 4 and his was 5.5 or something. Hashimotos seems to come up in my research. That is autoimmune too. Also I dont think ivig would effect that reading. ugh.
Oh lyme fatigue is a killer. I actualy take ritalin in the day to function a little!!!
Look into that, I was recently informed that with docs that specialize in thyroid disorders, they actually like the TSH around the 2 range so 5.5 seems high. Did that not get mentioned at your appt? It was yesterday right? Who did you see?
The fatigue has been beating me down since my surgery (and aching like i have the flu)...and I have to wonder if the 3 weeks of steroids I was on a few weeks prior to surgery added fuel to the fire and I'm paying for it now...
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My DS10 has the MTHFR C677T homozygous polymorphism and showed high titres for the first few years of our tracking him. They are normal now -- but he was treated with abx for over a year, so that may be why they lowered. But he did have the polymorphism and *did* show titre rise. (I am heterozygous and also show high levels (am asymptomatic for strep).
Hi - I also saw someone post recently that either Dr L or Dr M (can't remember which) said that those with MTHFR polymorphisms that impact the methylation pathway, aren't showing a rise in titers...
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For a long time, we had to pay cash for azithromycin and it can be VERY expenive - it was $400 per month at CVS for either 250 mg once per day or 250 mg twice per day -- I forget which. However, at Costco, it was only about $120 per month, and the last time they filled it, they used Z-Packs and that brought the same prescription down to about $60 per month. I strongly suggest using costco (perhaps they will fill it from their internet site if there is no costco near you) and ask them to fill it using Z-Packs. This is for tablets -- don't know about suspension, but I taught one child to swallow pills at age 5 and the other at age 7, so it can be done, if necessary. We practiced with swallowing small candies, then moved on to M&Ms.
You can also call around pharmacies and ask what their cash price -- no insurance -- is for a specific dosage. They can vary enormously in price.
Good luck!
We are switching to United Healthcare in a couple months but it is a high deductible major medical policy. We are currently with a Cigna PPO which charges only a copay for long term Azithromycin. When we switch over we will be on the hook for the entire cost of the prescriptions until the deductible is met. My question is how to get long term Azithromycin prescribed and filled in a situation like this. Can you get longer prescriptions than a few days at a time? We are currently using a suspension.
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What's the best lab to use for kryptopyrrole testing? And is there a consensus about stopping b vitamin supplements before testing? I contacted Great Plains lab, and they say don't need to stop supplements.
Thanks.
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Anyone notice if methylguard plus from Thorne turns their urine a different color? We've noticed this -- wondering what it means, if anything.
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DS10's vitamin D levels keep dropping and it was suggested to put him on supplements (which I've done before). He was at a pretty good place, tic-wise, and they shot up with the supplementation. I've seen this before, as well.
Anyone else? Any thoughts as to why? I just ordered some D2, to try instead of the D3. Anyone have experience with that?
Thanks!
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Has anyone been given any recommended dosages for 5-MTHF supplementation for homozygous C677T mutation?
Thanks!
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Has anyone been given any recommended dosages for 5-MTHF supplementation for homozygous C677T mutation?
Thanks!
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Yale did a study that showed that supplementing with NAC (N-Acetylcholine -- available from health food stores) helped a lot of people with this. If you check NAC on amazon, you'll see people say it pretty much stopped their hair pulling.
You should google NAC and yale and see their recommended dosages.
-- Liane
Hi everyone,
I am posting because I would like to help a friend whose child developed trichotillomania a few months ago. I only found out recently that they have been dealing with this.
For those of who have experience with this symptom, can you answer a few questions for me:
1) How old was your child when this began?
2) What other symptoms did they have?
3) How did you connect the hair pulling to pandas? Can you have trichotillomania and it not be attributable to pandas?
4) What treatment helped your child the most?
I am debating whether to have a conversation with her about pandas, but I feel a little uneasy about it.
Thanks for your help! This forum is such a great resource.
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Very curious about this also. Sounds like me from the google search description. 2 miscarriages before giving birth to DS with PANDAS. Do you have any other references?
It is a genetic test that you can run through quest. Apparently, it is also important to check B12 levels, as well as methylmalonic acid.
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is this genetic testing that your doing?
Yes, based upon the experience of others on the latitudes boards.
Pediatrician Not On Board...
in PANS / PANDAS (Lyme included)
Posted
Just to let you know, we had to find a new pediatrician this January due to a change in insurance. I called and/or visited several practices and explicitly asked them if they would accept us as full-fledged patients if my kids were not completely vaccinated. Several said "no" right up front -- so I kept searching until I found one that said they prefer vaccinations, but they respected and would accept us regardless. Their administrator said that the clinics lose "insurance points" for not making sure that all patients are fully vaccinated, but their practice had decided that their responsibility was to their patients rather than to the insurance companies, which is why they had the policy they did!