Topic: How many turned the corner after addressing MTHFR?
tickled1
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I suspect I have this. Just wondering how many of you with this turned the corner after addressing it? That would be wonderful news!
It would stink to find out I have it but it sure would explain A LOT! It would be nice to be able to do something about it too.
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nefferdun
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I just found out there are 30 mutations that deal with methylation, not just the one I was focused on. Boy is that ever an eye opener. I just order the Yasko test which costs about $500 but tests for all 30 and then gives you individualized feed back on exactly how to treat it.
The one heterozygous mutation I have was a stunning revelation. The simple fact I have hypercoagulation (thick blood) which can be caused by the mutation explains so much. I read the capillaries are 8 macrons (?) wide and red blood cels are 7. When the capillaries are clogged with fibrin, it slows things down.
That means less oxygen is delivered to the cells, less toxins are taken out (and more building up) and there is less penetration of abx into the tissues. The pathogens can even hide between the walls of the capillaries and the fibrin attached to it. I believe biofilm is associated with thick blood.
So just this ONE thing is making a huge difference. I can't tell you the effects of treating it. The doctor here refused to give me heparin so I ordered Boluoke which hasn't come yet.
But I do feel the effects of the methyfolate in other ways. I sleep better. I am MUCH happier - almost giddy at times. I restarted the drugs and they seem to be working better. I have no symptoms while on them except for loss of stamina and the slowly lifting brain fog, both of which are strongly related to the lack of oxygen.
I also have high iron, which could be another mutation. Maybe not the one I was thinking but something is making it high. That can make you feel very tired and brain dead. In fact high iron can destroy the liver, the pancreas, the heart and cause dementia (brain lesions). It also feeds bacteria.
So it makes a HUGE difference. I wonder why no one has ever hit on this before. I almost feel like I should send a letter to all the LLMDs telling them to pay attention to this testing.
The very fact that I am so fired up over this is a testimony to how much is it making a difference. Usually I would not give a hoot about anything.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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17hens
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Wouldn't it be great if you could ask this question to all the old posters who have come and gone?
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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tickled1
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nefferdun,
Who tested you? Is it your LLMD who is refusing to address it? I think I am going to take enzymes as well but am so confused as to which ones to take and also confused between systemic and digestive enzymes.
17hens, Yes, it would be nice to know how much of a factor MTHFR may have been in those who have recovered that don't come here anymore.
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posted
Please go to MTHFR.net...this is the best site for MTHFR...I t is run by a ND doctor that suffered for years with blood clots, fibro and found out about his mutation as well as his wife's and kids. He knows more than anyone I know on this and the right type of supps and dosages per mutation. I am going to get a phone consult with him as soon as LLMD does ISAC panel ..My Yasko test will take weeks ( I think 8?)...But this guy lives it...
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Tammy N.
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I was going to start a new thread with this same question....
As I asked on a previous thread: I'm curious to know who was able to actually "crack their code" and get the rights supps.... AND IS SEEING LASTING BENEFITS. Anyone actually know of anyone who is SUCCEEDING in this area?
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Tammy N.
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BTW - I went to a new doctor 2 weeks ago who drew blood to test for MTHFR. I'm not sure how extensive the testing will be. But I will report back after my next appointment to share what I learn. I was impressed that she brought it up. So we'll see...... I really can't wait. I'm hoping for a breakthrough.
Right now I can't seem to tolerate the supps I was taking. I think the methyl B12 injections were putting me over the edge. Sounds strange, doesn't it? I thought they worked for everyone. I guess I'm special.
I also decided I will be going to a gastro guy to take a closer look at my liver. I want to see why I always have elevated bilirubin. And also try to understand why my body can't seem to convert the B vitamins. I seem to have difficulties with most of them. He may not be able to shed any light, but I thought why not give it a try. And he is in my insurance plan, so what the heck.
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tickled1
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My bilirubin is also always high. Hoping glutathione will help.
I thought B12 injections were supposed to help w/MTHFR
How were you able to determine you are not converting B vitamins?
Good luck w/the gastro guy. I've seen 2 and had bad experiences with both.
Can you please PM me who this doctor is that you are seeing that brought up MTHFR since you and I are both on the East Coast? Although I'm not sure where on the East Coast you are. I'm in New England.
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My B12 and Folic Acid were actually high. I guess my body's not using it correctly or something. I too thought everyone needed B12 supplementation. I don't know what's up with that.
My LLMD had me tested for MTHFR as well, along with some Biotoxin stuff. I'm eager to get the results.
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posted
i think we all can turn a corner when we address the MTHFR's in our lives. Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
I had to laugh Mo... I always think of that when I see this mutation mentioned... mercy... thanks for the laugh tonight!
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tickled1
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Are you saying what I think you're saying Mo?!
If so, too funny b/c when I emailed my hubby about MTHFR he said "MTHFR?". "Does that stand for"....well, you can guess what he said! LOL!
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tickled1
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Tammy N.,
I found something about methyl B12 VS hydroxy-B12. I couldn't quite wrap my mind about it but thought it might apply to you. The website is below and part of what he says about methyl vs hyroxy is below that:
"According to the work of Dr. Richard Deth, methyl-B12 seems to work better in the brain, especially the cortex, than it does in the liver. This is probably because glutathione is very abundant in the liver but limited in the brain and methionine synthase in the brain is configured differently than in the liver. The methyl-B12-requiring form of the methionine synthase enzyme will only be active when there is enough glutathione around to synthesize methyl-B12. Of course the first step is the conversion of hydroxy-B12 to glutathionyl-B12. This occurs spontaneously when hyroxy-B12 and glutathione are simply mixed together. It�s limited only by the glutathione level, which is how nature designed it. So in tissues like the brain (neurons) where glutathione is scarce, methionine synthase activity will only be turned on when glutathione is adequate. Otherwise homocysteine will be continuously diverted toward glutathione synthesis. Thus methylation (i.e. D4 receptor activity) in the brain is only allowed to occur when there is enough glutathione. Things that lower glutathione (e.g. mercury) will therefore particularly lower methylation activity in the brain. SAM is also required for methyl-B12 synthesis, but does not seem to be as critical a limiting factor as glutathione.
At least theoretically, there could indeed be people for whom hydroxy-B12 might be better than methyl-B12. Making methyl-B12 available all the time removes the glutathione contingency for methionine synthase activity. It does guarantee that the D4 receptor phospholipid methylation mechanism will always be operating at better efficiency, despite lower glutathione levels, which is probably the main cognitive benefit of methyl-B12. However, allowing hydroxy-B12 to be converted to glutathionyl-B12 by glutathione may be important for other aspects of methylation. For example, consider DNA methylation. When methionine synthase stays turned off, homocysteine and SAH accumulate. The SAH will inhibit DNA methylation and �turn on� some genes that used to be silenced by methylation. Some of these genes may serve a useful role in combating oxidative stress. When methyl-B12 is given it will tend to lower homocysteine and SAH, which will tend to increase DNA methylation. Of course at this time we can only speculate about what genes might be involved, so this is just a theoretical perspective.
In general there is the possibility that too much methyl-B12 could be a problem, so finding the right dose and right duration of therapy for a given individual remains an important consideration. Hopefully in the near future there will be laboratory tests allowing us to discriminate between who needs methyl-B12 or hydroxy-B12 and who doesn�t."
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I like following your post on this subject because I think you and I are having similar problems.
I tested positive for MTHFR gene too and have high ferritin levels.
I am not whether it's the lyme causing my pituitary gland to not make the ADH hormone or if it's stored iron in my system.
I received my 2nd lab results today from my endocrinologist and she said I tested negative for hemochromatosis gene, but my iron levels are high.
Additionally, she said my blood is thick along with hypothyroidism.
She is referring me to a hematologist, but I've seen one in the past and i know they won't prescribe phebotomys to get rid of the high iron.
I just had a thought the other day maybe I can see if my LLMD will prescribe it. In the meantime, I am low on ADH and my endo won't give me the replacement hormone, so since I have a phone consult with my LLMD tomorrow I will let him know and maybe he will prescribe it. I don't want to die from dehydration.
The other thing I have noticed is the thickened blood in my head. I feel like I have this extra thick gel-like substance in my head when I move my head around or if I'm walking too fast along with the feeling that something just wants to leak through my ears. It's a gross feeling.
I read that to detox iron from the body and brain one can use quercetin, green tea extract, curcumin, alpha lipoic acid, pomegranate or cranberry juice. I got this from the monthly life extension magazine that I recieve because I'm a member.
17hens
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quote:Originally posted by sk8ter: Please go to MTHFR.net...this is the best site for MTHFR...I t is run by a ND doctor that suffered for years with blood clots, fibro and found out about his mutation as well as his wife's and kids. He knows more than anyone I know on this and the right type of supps and dosages per mutation. I am going to get a phone consult with him as soon as LLMD does ISAC panel ..My Yasko test will take weeks ( I think 8?)...But this guy lives it...
sk8ter, I looked this up - The doctor seems like a good guy - I enjoyed the video and reading the site - very interesting! I'm bookmarking it. Thanks for sharing!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
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Maya12
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Just wondering is high feratin always a sign of this gene mutation? I actually always have low feratin and my dr tells me I am iron deficient. Are there other blood test signs that corrolate with this gene mutation?
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tickled1
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Good question Maya. I'd like to know too if one has to have high ferritin to have MTHFR. If it's low does it mean you don't have it?
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posted
Please go to that site MTHFR.net..this is the best for this condition....i will be talking to him shortly
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nefferdun
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betty, we do sound alike. I ordered IP 6 to bind with the iron which hasn't arrived yet. Someone that has hemochromatosis told me about it. She said it works very well. I don't believe high ferritin goes with MTHFR but I don't know. One of us should ask Dr. Ben and maybe he will answer. It might be the body hiding the iron from the infections.
What is your ferritin level? Mine is about 350 (normal being 0 to 150).
I could not get heparin but I am going to try again next week. I wish I could get phlebotomy because getting the blood out might work quicker for both conditions I ordered Boluoke. I read I need to take 6 capsules a day for a month to reduce it 10 to 20 percent. That will cost $300.
I am having a very bad day having done three days of DMSA which left me a mess with no sleep. It is so unfair for us to be treated like this.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Jane2904
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Daughter has MTHFR and her ferritin is low end of normal.
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Tammy N.
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tickled - Thanks. Very interesting. I've read it twice and will need to read it again. I'm trying to absorb so much information that my brain seems to be on overload.
I can't fully understand why I have difficulties with the Bs (and not just methyl B12). But I did read today that a lot of the Bs have sulphur content.... and I am sensitive to sulphur, so maybe that's part of the problem. (I have become way more sensitive in the last year. ugh.)
betty - Tread carefully with the ADH medicine (Desmopressin was the one I was taking). I have been taking it since early November and am now trying to wean off. I have been dehydrated for as long as I can remember. I was anxious to get on this med hoping for amazing relief, as I've heard other people say. For me it hasn't turned out that way. In fact, I have been having a lot of difficulties. First of all, I didn't ever feel "quenched". So I kept drinking my usual large amount of fluids with electrolytes, etc. I thought this would be a great idea....thinking now I will actually be able to hold onto some of the fluid and maybe get things flowing in my body. Well, it's taken me about 3 months to figure out why I kept crashing....needing to run to the doctor's for emergency IVs of saline and magnesium, etc. It turns out that one of the possible side effects of this medicine is that it can drop your sodium. That's what kept happening to me. I didn't realize how dangerous it could be until my doctor made it clear that if she is not in the office and I crash again, I need to go to the ER. I've been trying to monitor my blood frequently right now to keep an eye on things.
Also, during this time I lost 10 pounds that I cannot afford to lose. I am not happy about this. I was worried about a possible side effect of weight gain, but I went the opposite way. I'm trying to gain it back but it seems nearly impossible. I'm hoping my body will rebalance itself somewhat as I safely try to wean off this med. Plus, overall, I don't really like the idea of messing with hormones. I think it can be dangerous territory.
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Tammy N.
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Please try to read my new thread on Gilbert's Syndrome with the link I shared..... it seems so very related to all of this that we are discussing here.
It's coming clear to me that all roads seem to lead right back to the liver.
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Let me know if balouke works for you. I ordered lumbrokinase from allergy research group out of the vitacost website as it was cheaper than balouke.
Honestly, after using it a couple of months I didn't notice much, so I switched back to the cheaper nattokinase and have been taking that daily.
The article out of life extension is called "Excess Iron and Brain Degeneration: The Little- Known Link" and the research is about the link between excess iron and neurodegenerative disorders. To summarize it here are the main points:
- accumulation of iron in bodily tissues is an inevitable consequence of Aging
- Pathologic age-related iron overload damages cells and tissues and is a causative factor in numerous degenerative diseases, including liver fibrosis, cardiovascular disease, and cancer
- few doctors inform their patients of the dangers of high total-body iron distributions, nor do they test for total-body iron status
- excessive iron accumulatins are found in affected brain areas of people with alzheimer's, parkinson's and other neurodegenrative diseases.
- even in normal older adults, people with higher brain iron accumulations perform more poorly on cognitive tests than do those with lower brain iron concentrations
- a breakthrough UCLA study demonstrates that limiting lifetime exposure to iron can reduce brain iron accumulations.
- A number of nutrients can help reduce your body's total exposure to iron through chelation (binding to free iron atoms) and antioxidant activity, including quercetin, curcumin, r-lipoic acid, and silymarin, green tea extract because of the EGCG (epigallocatechin-3-gallate) has been shown to powerfully chelate unbound iron and protect vulnerable tissues.
"EGCG from green tea has now been used safely and effectively to bind and remove iron from the blood of individuals with thalassemia"
"In studies of animals deliberately overloaded with iron to mimic aging, green tea extracts are able to bind to free iron and reduce iron-related tissue oxidation in brain and liver tissue"
"unlike many drugs and nutrients, EGCG readily crosses the blood-brain barrier, which allows it to capture and isolate iron from the brain regions affected in alzheimer's, parkinson's, and huntington's diseases"
"In contrast to many current drug therapies, which can only modify symptoms in these tragic conditions, iron chelation by EGCG rich green tea extract offers the potential to prevent and reverse the progression of the disease process itself"
I've been taking the above supplements for about a week now, so I'll let you know how it works.
Tammy -
Thank you for this information. Do you know why you aren't making ADH? Do you have a problem with your pituitary gland or kidneys?
I can't seem to gain weight either and my skin is serious dried out as well as every part of my body that should have some moisture (i.e. eyes) so not using desmospressin is not an option for me right now.
I had my phone consult with my LLMD yesterday and he called in desmopressin for me. He said it wasn't a big deal. Here's the scary part though, he is a well known LLMD in N.Y. and he told me he hasn't seen this problem in any of his lyme patients and he has been treating lyme for a very long time.
Now, I feel like maybe I should check into this more thoroughly because it may not be the lyme causing it.
"Asparagus Pee and MTHFR"
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steve1906
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If that was true (asparagus) - Everyone would have MTHFR?
Read this study...http://www.chow.com/food-news/53808/does-everybodys-pee-smell-after-eating-asparagus/
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tickled1
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I didn't have a chance to check your link yet but does it say everyone's pee smells like asparagus? The link I posted said that not everyone's does.
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steve1906
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Yes...everyone...
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tickled1
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Who knows. The article I read said some peoples' smells and some don't and some people can smell it and others can't and/or any mix of the two. The one you posted said everyone's smells. Oh well, don't know which one is right.
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steve1906
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I agree, who knows...I just read another that said it's 50-50.
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posted
I have been taking methylfolate for about 5 months, I had such high hopes for this. I was getting ready to get off abx and relapsed something. I'm back on 3 abx and not feeling very good these days. As far as it being a key, it wasn't for me.
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nefferdun
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betty, thanks for all the information. I wish I could get someone to order phlebotomy for me. I see the doctor Tues and maybe he will. I am also going to ask for heparin.
I just got the IP6 for the iron and took my first dose today. I am also taking lactoferrin and it is supposed to bind with metals including iron.
I am REALLY concerned about the iron and hypercoagulation (as well as the infections) making me senile. I just don't have any memory left. I forget things in an instant.
I started augmentin and had a horrible reaction to it. I also took a round of DMSA and thought the problem was with heavy metals poisoning me. I am just recovering from that so I extremely tired and spacey.
We are supposed to detox but be careful. I don't know how much, if any, the DMSA could have contributed to the reaction I had but I read it can be heavy duty. So from now on I am doing Cilantro.
I re-read my post and it sounded like I meant I have been taking boluoke and am seeing a difference. I just got the Boluoke yesterday. I read you are supposed to take 2 caps 1/2 hour hour before eating (on an empty stomach) 2-3 times a day. Then after a month it will reduce the hypercoagulation by 10-20 percent. That is not very much. As it is very expensive I am not sure I can take that much so I am also taking aspirin. Sure hope that doctor gives me heparin.
RCI, thanks for sharing that the methylfolate did not help you. Have you been treated for hypercoagulation which MTHFR (as well as the infections) causes?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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I have the same memory problems. I started wondering if I had early alzheimer's. I definitely think there is a connection between all of this and the memory thing.
I forget things quickly too. It's terrible. I'm only 49 and shouldn't be having so many problems with that.
I also have borderline hypothyroidism and am in menopause too, so any or all could be playing a part in the memory thing, along with lyme and co-infections.
Do you have head and ear pressure too? That is my worst symptom right now along with dry, itchy eyes, and neck pain. It seems as though all my symptoms are from the neck up.
Tammy N.
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betty - I don't know why my body is not producing enough anti-diuretice hormone. I met a lot of Klinghardt's patients in the 2 visits I had out in Seattle, and a lot of them have dehydration as a part of their problems. Dr. K speaks of it in his lectures, and it sounds as if it is a fairly common problem among his patients. Hard to say what it's from. Dr. S lists it as a symptoms with the mold toxin issue. Sjogren's (autoimmune disease) plays a role with it, especially in the mouth and with the eyes. Does't thyroid play a part also?
For me, certain foods make me incredibly thirsty. Especially anything processed, and especially anything with sulphites, sulphates, etc. I've learned to steer clear of these things, and I do feel better. Less thirsty.
It seems like it can be related to so many different things. It's hard to say. Still trying to figure it out myself.
I think it is particularly important to take in the right fluids, and not just water. With our situation, water just causes us to pee out our minerals. Not a good thing. It's important to add in electrolytes (I use electrolytes, per Dr. K). I also drink coconut water (naturally high in electrolytes), etc.
I do think you should look into it more carefully before just jumping aboard. And if you decide to give it a try, go with the lowest dose possible, and maybe even cut that pill in half, as a start.
Good luck.
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tickled1
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Does anyone know if I can draw any conclusions as to whether or not I have MTHFR and if so what kind from what my Metametrix tests indicated?
The tests shows that I have:
- high succinate (CoQ10 recommended)
- high hydroxymethglutarate (CoQ10 recommended)
- very high B-hydroxyisovalerate (Biotin, B2 recommended)
- high 5-Hydroxyindoleacetate ---
- high p-Hydroxyphenyllactate (Vitamin C,E recommended)
- 8-Hydroxy-2-deoxyguanosine (Vitamin C, E recommended)
- high Pyroglutamate (N-acetylcysteine, Glutathione, other sulfur containing a.a. recommended)
- high Phenylacetate (probiotics recommended)
- high D-lactate (Non D. Lactate forming probiotics recommended)
- low Lysine (L-lycine HCI recommended)
- low Isoleucine (L-Isoleucine recommended)
- low Leucine (L-Leucine recommended)
- low Valine (L-Valine recommended)
- high Tryptophan/LNAA
- high H. Pylori (I just finished Prev-Pac for this)
- high (+3) yeast/fungi (taxonomy unavailable)-"A taxonomy unavailable finding may indicate ingested mold. The higher the number, the greater the indication for treatment, particularly when accompanied by clincal symptoms." (range +1 - +4)
- positive for aacA, aphD drug resistance gene
- low Acetate %
- high Propionate %
Additional supps. recommended:
L-Phenylalanine
Taurine L-Threonine Glycine Other Antioxidants strongly needed Selenium
Showed Delayed allergy to:
Casein Eggs Lamb Milk Wheat
Input anyone? I'd love to hear it!
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