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New here and very sick. Please help:)

Messages
11
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In my own little world
Hi everyone. A year ago I became severely ill. I tested positive for Lyme disease with a cd-57 ofonly 20 and c4a of 8,000.

I've had reflux, gastritis, daily migraines, vestibular issues(vertigo, no balance), sensitive to light and sound, ringing in ears, head pressure, sore neck, muscle twitches, fast heartrate upon standing, very low cortisol all day except at night, etc.

I've been unable to drive for. 6 months and my dr admitted me to the hospital for a week thinking I had MS but MRI was ok.

I also have hashimotos, low ferritin, and low magnesium. I'm only 31 and stuck on my couch with young children.

My friend told me about mthfr and mtations so I got the test. HEre are my results. Any assistance at all would help me so much. I have no quality if like. Thank you!!!
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minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
Where are you? There might be a doc in your area.

(Please put paragraphs after every 2 or 3 sentences for those of us with cognitive issues). Thanks
 

tdog333

Senior Member
Messages
171
I'll give you a very basic description:

With a double COMT you're going to break down dopamine and its byproducts such as adrenaline very slowly. You also have limited tolerance for methyl groups, meaning you can overmethylate easily. I think it's kind of a good thing you have a VDR mutation(vitamin D receptor) because this will slow your dopamine production down a bit. If you supplement with B12 using hydroxyb12 would probably be a safer start than methyl12. I don't know much about MAO A but I believe it is used to break down serotonin so your ability to do that will be diminished.

You're hetero for MTHFR C677T so you may benefit from some Methylfolate and it would probably be best to cut out any folic acid you are taking even though you aren't homozygous.

You might benefit from cutting back on high sulfur foods due to your CBS mutation as well.

I'll write more later since I don't have time right now. You should find a DR who can help get your individualized protocol working and help you understand your results better.

(I'm not a DR so any info I provide is to help educate you so you and your DR can make decisions together)
 
Messages
11
Location
In my own little world
Thank you so much for the info.

Funny you mention the overmethylate easily. I wonder if that's what happened to me.

My friend told me to start taking methyl b12 and I got severe anxiety around that same time a year ago. I was only taking 1000. I still have a small amount of methyl in my multi vitamin. (Natural vitality liquid multi.) but I've tried to start juicing for vitamins instead.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Hey man, I have same exact symptoms as you and also have lyme disease... Check out this link.. after much research and experimenting myself I found Dr. Jernigans protocol the most effective over all.. Even better then things like IV antibiotics which can make people sicker in the long run...

http://hansacenter.com/about/

Just purchase the book and start the protocol in it and I think you will have great results, just note it takes extreme discipline to follow through with all the de toxing, immune support, and fixing any other areas which may be problematic!

THe other best thing you can do is try to get on Fred's methylation protocol, this will help strengthen your bodys natural immune system, and de tox pathways among many other things.. Chronic illness like Cancer, Lyme, CFS, and other things can lead to blockages or issues with proper methylation..
 
Messages
11
Location
In my own little world
Thank you. What is Fred's protocol? I was on antibiotics for a few months but I felt awful. I know you're supposed to feel worse if they are killing the lyme but I don't think I can detox enough to get rid of all of the meds and toxins so I stopped taking everything:/
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
THats why I suggested Dr. Jernigans stuff.. His philosophy is that herxing is the bodies way of telling you it is overwhelmed and need to slow down.. He focuses a lot on getting the neuro toxins, and other toxins the lyme releases in the body out to cleanse everything, alongside a bunch of de tox therapies. On top of the herbal tinctures to target the different strains of bacteria.. Ideally you are trying to support your body as well as possible to clear out the infection and restore a state of harmony and balance itself.

I just couldn't handle aggressive antibiotic therapy either, I almost could have died from all sorts of weird brain and heart stuff from the way I was herxing so bad before..

Thankfully I cam under the care of a competant LLMD now who seems very good at being able to watch and make sure I do not do too much..

Fred's protocol on methylation can be found here.

http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/


If you use fred's protocol just be sure to stop all folic acid supplements and any foods containing it take out of your diet, as well as NAC supplements, Glutathione supplements, and Whey protein powder.. These all interfere with the protocol and cause methyl trapping.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@Sazco, Also, your MAO-A ++ suggests high histamine problem, which can manifest over multiple systems. I can tell you that in order to lower both histamine and sulfur (high thiol) foods, you'll find many things unavailable, your juicing ingredients will shrink. I'm posting links for both of those lists. Re Hashimoto's, after decades of supplementing thyroid with synthroid, I switched to T3 only, which was a great improvement.

If you haven't done so, you should at least consider eliminating gluten temporarily, to see if it helps things. That was where my healing started after 8.5 years disability. Also dairy. Sorry. For me, the GAPS diet has been wonderful. I'm also linking a simplified FAQ based on Freddd's Protocol. I'm sorry to hear of your troubles, it may be a long slow healing process, not easy with a young family. You will find yourself now on a steep learning curve, with all the strands to these devastating collapses our bodies experience. Best to you, ahmo

Here's a (long) doc re treating Lyme from Dr. Klinghardt, who works w/ lyme, autism. (I just noticed in opening this doc that he reocmmends detox baths. You can, at least in part, substitute footbaths here, something that will save you a bit of time, water.)
http://www.klinghardtacademy.com/images/stories/powerpoints/treatinglyme 2010.pdf

Simplified explanations re MTHFR and methylation:
http://www.autismnti.com/yourbodyschemistry.html April Ward-Hauge body chemistry


http://howirecovered.com/active-b12-therapy-faq/ Freddd's Protocol

http://livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/

http://roosclues.blogspot.com.au/2010/03/overview-of-high-histamine-also-called.html
http://forums.phoenixrising.me/index.php?attachments/allowed-restricted-foods-pdf.6408/
http://peelingbacktheonionlayers.com/could-histamine-be-sabotaging-your-digestive-health/
http://www.thelowhistaminechef.com/


http://thyroid.about.com/od/hypothy...ptimal-Treatment-Hypothyroidism-John-Lowe.htm
http://www.stopthethyroidmadness.com/

http://theliberatedkitchenpdx.com/basics/its-so-easy-gaps-intro-stage-1/
http://www.healingthroughgaps.blogspot.com.au/
 
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Messages
11
Location
In my own little world
Thanks!! Yes I was having a ton of neuro issues and irregular heart beat in antibiotics. I will look into herbals, thanks!

I have been gluten free for about 9 months. I did eat gluten over the holidays for a week but then cut it out again. I did notice that juicing seemed to make me feel worse. It really is like the healthier I eat and more vitamins I take, the worse I feel:/ so,stokes I think if impound just eat junk all day I would atleast feel better. But I don't:)

I will go check out those links. thanks!
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Even on the herbals be careful, his site offers some that won't cause much of a herx but its important to take them with Neuro anti tox, other herbs like Samento, Banderol, Grape Fruit Seed, Olive leaf extract, Wild oil of oregano and other things can make you herx hard as well.. So important to start low and work your way up based on how you feel.. I know some people that ended up in the hospital from herxing so hard even on herbals.. Much more common with IV antibiotics though.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
My juices are now carrot and lettuce. I can't get organic lettuce, so I use hydroponic. But my body always self-tests negative for commercial carrots, they absorb pesticides as roots. I also have a lesser problem w/ oxalates, and seem to do better w/ only a small carrot, instead of the 5 I used to juice. I add chlorella for pulling out the bacteria, luckily I can tolerate this high sulfur supp. Oh, dear, this path is so filled with STOP signs.:confused: I don't mean to be discouraging, but to break it to you gently that once we start, we often find so many factors are involved. Many experts say that as we heal, these issues, sensitivities, intolerances will pass. Neurologist Natasha Campbell-McBride, who developed GAPS in healing her autistic son, gives a special shout-out to ME/CFS sufferers, as it takes a long time and commitment to rehabilitate. cheers, ahmo
 
Messages
11
Location
In my own little world
This is all so overwhelming!! appreciate the warnings!! I usually juice kale, spinach, carrot, and apple.

I have a local organic farm that delivers organic fruits and veggies to my door once a week. That has been so helpful! I also use green vibrance. Is this bad with my mutations?

So sounds like I need to go slow and start low with everything?
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Just try the jernigan protocol, purchase the book and get the three supplements of Limogen, and Neuro Anti Tox 11, and Molybdenum... The limogen will get your immune system on track and take care of the lyme infection and the Neuro anti tox and Molybdenum will scrape up all the damaging free radicals which are making you sick... Most people do not realize but it is not lyme disease bacteria that makes you sick, rather the inflamed cytokine activity it can cause, and the neuro toxins that it releases that cause people to become very sick...

The book will also go into description on how to take the supplements as well as the importance of DETOX support! Take De tox seriously cause again the bulk of the symptoms are from toxins released from the infection not the bacteria itself, every time the bacteria dies it will release this so it is important to have consistent de tox support while supporting the immune system to respond to the infection!

Fred's protocol can also help but if you are gonna do something immediately for the lyme that is what I would suggest...

You don't need super high dose antibiotics to treat the infection, this will only make you much sicker from being overwhelmed of toxins from killing too much bacteria at once..

Lyme is an incredibly slow replicating bacteria and it goes through life cycles. so chances are it has already gone everywhere it will so there is not much to try and worry about or prevent.. You can have a full recovery but have to stick to a solid treatment plan that will not overwhelm you too much with toxins and create longer term toxicity,.
 

Helen

Senior Member
Messages
2,243
Hi everyone. A year ago I became severely ill. I tested positive for Lyme disease with a cd-57 ofonly 20 and c4a of 8,000.

I also have hashimotos, low ferritin, and low magnesium. I'm only 31 and stuck on my couch with young children.

View attachment 6736

Hi Sazco,

Welcome to the forum. So sorry to hear about your situation. I would stress treatment of what you know for sure (and your Lyme of course); low ferritin, low magnesium and Hashimoto´s. I hope you get optimal treatment for these deficiencies as they can give a lot of serious symptoms as those you already have.

Ferritin is also very important for a well-functioning thyroid. If B12 is low, that can have an impact on the ferritin level. A doctor said " without enough B12, the iron will not stay".

I, like someone else before me, recommend the site www.stopthethyroidmadness.com where you can find information how to optimize treatment of your Hashimoto´s, or to ensure you already have one.

Your gene defects might cause an impaired methylation. If affordable I would recommend the test Methylation Pathways Panel so that you can make sure if you have a decreased methylation or not.
http://www.hdri-usa.com/tests/methylation/

Maybe you have labtests done for B12, folate, homocystein? As you don´t mention them I suppose they are OK or not done. They could also indicate a methylation problem, but they are not always valid. The test mentioned above include folate analysis.

Try to take "first things first" as you get easily overwhelmed by all treatment possibilities. Methylation and thyroid function (and of course Lyme treatment) are often superior to many other options. Wish you all the best.

Helen
 
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Messages
11
Location
In my own little world
Thank you all so much. Ok attempting Jernigan protocol. My friend has a dr in Atlanta who gave her teasel root for lyme. Heard of that?

I had my b12 checked and it was twice the normal amount...it was 1900 I believe. I have not had folate or homocysteine checked.


I am on nature throid which seems to be helping, solgar gentle iron, and magnesium.
 

tdog333

Senior Member
Messages
171
B12 lab tests can be very unreliable depending on which one's you get done. With a certain mutations the body can't use or convert the B12 very effectively and it just "floats around". When I got my B12 tested it was very high- about the same as yours. Once I got my methylation results I saw why. Yours aren't too bad but the MTHFR and MTRR can mess with stuff. Plus it depends on the B12 your taking. I recommended starting with Hydroxy12 earlier but I wanted to say if you don't notice significant improvements on it I'd switch to MethylB12, but all that's up to you. I'm still trying to figure out how to get around the COMT mutations myself.
 
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