2 years on GAPS part 2- My Story
With baby #2 came more exhaustion. At least this one slept like a baby should for the first 6 months or so, until she didn’t. I had 2 amalgams fillings replaced when she was 6 months old and within 48 hours of that procedure she developed food allergies and reflux that had her up screaming and me back on the verge of a breakdown. This time, however, I wasn’t going to let my life be ruled by the baby so I signed up for things and made myself show up. Since other mom’s can accomplish things I determined that I was being lazy and I pushed myself to say yes more. Unfortunately my youngest’s health did not get better with time and the worry about her began to wear on me deeper and deeper. When her GI said that she needed an upper GI scope I panicked. I was so worried about the procedure and the results that I started us on the GAPS diet that same day. GAPS and SCD are very similar and despite the difficulty of the diet I really looked forward to getting even thinner and the surge of energy and well being that I knew would come, like it had last time. I did feel better at first on GAPS and my children improved quickly too.
Then in Feb of 2010 my younger dd got sick. She got very sick and one night she struggled to breathe. I sat up all night holding her and listening to her breathe wondering what to do. The next day her Dr diagnosed her with “viral asthma” and prescribed a homeopathic remedy and a rescue inhaler if that didn’t work. Thankfully the homeopathic worked very quickly and she recovered over the next few days. I however didn’t seem to recover. I felt like I had the beginnings of the flu all the time. Some days driving my eldest to and from school I worried that I would fall asleep at the wheel. My Dr tested my thyroid, my adrenals, B12, folate, iron and ran a test for Lyme disease. It all came up negative for a problem. He began to treat me like a hypochondriac.
I continued to go down hill. I was nervous to leave the house with my children because I had nearly fainted a few times while out with them. I started going for acupuncture twice a week. That helped some for a while but then it stopped working. I sought out second and third opinions from different Dr’s who had helped me in the past. No one really knew how to help me this time though. Then one Saturday morning when I was alone with the kids the left side of my face began to go numb. I worried at first that I was having a stroke. I finally figured out that it was bells palsy (common with Lyme disease). On Monday I went in to see another Dr in the practice with our regular Dr. She agreed that in light of the bells palsy and it would be appropriate at this point to run another Lyme test. This time we ran it through Igenex and it came back a clear positive. I had done enough research at this point that I couldn’t imagine any other result but it was still a bit of a shock and also a vindication. Now I had to figure out what to do. The biggest question before me was antibiotics or no antibiotics. I decided to avoid the antibiotics and try to address the Lyme in other ways. I knew that I wasn’t catching this early and results for treating chronic lyme with antibiotics are mixed. I wasn’t sure how long I had been ill. Lyme has lots of non-specific symptoms like exhaustion, brain fog, joint pain, digestive problems, hormonal problems. I have had those sorts of symptoms at varying degrees for many years but couldn’t be certain they were caused by Lyme. We decided to test the girls at this point and they both came up positive for Lyme as well. We assume they got it from me and since my oldest has had symptoms consistent with Lyme since birth we assume they both got it in utero. That means I have had Lyme for at least 8 years at this point.
I followed the Buhner Herbal Proticol for quite a while and continue to use those herbs from time to time. I have taken several homeopathic remedies. I have taken Teasel. I follow the GAPS diet. I did an all raw primal diet for a while (should have done that one in the summer instead of late fall. Brrr!) I get better and get worse. I started a low oxalate (LOD) version of GAPS in the spring of 2010. I had a huge remission last winter that I thought was healing but with the warm weather in the spring my symptoms returned. I had another partial remission in September but that time it only lasted about 6 weeks. Just till I returned from vacation. One thing works for a while and seems to be bringing healing and then it just stops.
My current guess as to why this is happening is my MTHFR mutations. In order to heal the body I have to be able to detoxify it. If the toxins can’t leave I will remain stuck dealing with them over and over. As long as my methylation pathways are broken those toxins can’t get out in any significant quantities. They just move about the body and do some more damage and then resettle somewhere new every time I manage to shake them loose. Of course I could be wrong. I have had many theories over the past nearly 2 years since my health crashed.
So what is my day to day like now? I am tired. Most days climbing stairs feels like a hike up a mountainside. I avoid it if possible. I do my best to avoid extra movement and I take naps whenever possible. I used to take great joy in moving my body walking, dancing and riding my bike. Now it just flattens me. Sometimes my joints hurt, especially my hips. Often my muscles ache like I just did some hard physical activity but of course I haven’t. I just learned that this muscle ache is caused by a toxin the Lyme bacteria releases. Some days I struggle to read one page of print because my brain just can’t make sense of it. That is one of the more frustrating aspects of this. If I can’t get up and do anything at least let my brain work to keep me busy while I sit! Another frustrating piece of Lyme disease is that it turns down your immune system so I have to be very careful or I will be sick all the time. I still get sick far too often considering what good care I take of my body, feeding it nutritious foods, avoiding sugars and anti-nutrients, and avoiding exposure to germs. The latter is mostly because I don’t have the energy to leave the house much. I have learned that I need to never push myself or I will get sick. I got a lovely sinus infection as thanks for pushing myself at Christmas time, and felt guilty over how little I did at the same time. Some days I will suddenly be hit by gut pain that flattens me. Far too many times over the past 2 years we have been getting ready to leave the house and suddenly I am laying on the floor moaning in pain and our plans get canceled. Or I will simply suddenly feel weak and unable to stand. I do my best to not get in a position where anyone is counting on me because I have no idea when these moments will hit. I hate doing it to my kids though. Sometimes they are profoundly disappointed and let me know it quite clearly, but many times they have been able to help me and find ways to make the best of the situation.
What is my plan? I have done a lot of learning about health over the past few years in trying to heal myself and my children. I have come to the conclusion that we were created for health but things go wrong along the way. Returning to health, I believe, is a result of giving the body what it needs, (nutrition, rest, exercise, joy) and removing from it the things that harm it (toxins of various kinds, stress). I believe that Lyme disease and many other diseases are simply opportunistic. If my body had been healthy and well nourished it wouldn’t have become ill from an exposure to the Lyme bacteria. Instead, it would have fought it off and I may have never even known about it. Of course most Americans have too little nourishment and too many toxins and stress so it seems normal to be in this state. We are shocked when it catches up with us and we become ill. I am striving to nourish my body with nutritious foods, detoxify it and avoid further exposure to toxins. I am also using herbs, homeopathy, essential oils, and other approaches to try to encourage my body to fight off the diseases it is dealing with and to restore balance in my systems. It sounds simpler that it is.
What I am treating right now.
- Hypothyroidism with an overabundance of Reverse T3- Cytomel now transitioning to Nature Throid
- Adrenal fatigue- Hydrocortisone in physiologic doses now transitioning to Isocort
- Suppressed Immune System- Low Dose Naltrexone (LDN), Fermented Cod Liver Oil
- Lyme Disease- Defense + (ask me how to get this at a better price)
- Possible Parasites- Diatomaceous Earth
(more info on DE) - High Sex Hormone Binding Globulin- minerals, transdermal zinc and Magnesium Oil
and Seagreens
- MTHFR-methylfolate
, MethylB12 shots, TMG
, L-Cysteine
- Leptin resistance- Leptin Reset diet (this is also correcting my RT3 problem and my adrenal fatigue)
- I am also going for Acupuncture right now to support my detox focusing on my liver and gall bladder. I did a series of colonics in December and am planning on some visits to a FIR sauna once I get my methylation working better.
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Wow, Patty. That is a lot. I am very sorry. I have to say, when I started GAPS, I read your story and a few others (Kristina), and i got so nervous. Was I doing the right thing? We weren't even "sick" to begin with, not compared to some, and my husband wasn't on board, so I was worried I'd mess us up, and he'd be mad at me
My kids have seen nothing but positives. DH and I have seen both. It's an interesting process - healing.
Curious what you take the l-cysteine and tmg for? I gave a MTFHR mutation but currently I'm not taking anything for it besides the extra folate. I'm interested in the transdermal zinc but some of the ingredients scare me. Are you not concerned about the patabens in the zinc? Do you supplement but d?
L-cysteine helps further along in the methylation process in making glutathione. TMG is a methyl donor so it also supports methylation.
To be honest I hadn't looked at the other ingredients in the zinc cream since most stuff made by Kirkmans is very clean. I'll go look at it now. I have been wondering if I could figure out how to make a zinc cream myself that would be cheaper and perhaps more concentrated so I don't have to rub so much in. I know I am very low in zinc but just can't tolerate it orally except in an extremely tiny dose lately.
I do take extra d some of the time (like if I am coming down with something) but generally rely on the d in my fermented cod liver oil most of the time. One of my D tests showed me to be very high in one kind of D so I'm concerned about over supplementing. It's an issue for people with Lyme sometimes.
I think that I was on the brink of collapse for a long time before I did. I certainly had Dr's in my life warning me of it for years but I just kept going thinking I had no other options and I could rest later. Eventually it catches up with you. GAPS does add a new layer of stress to your life, esp if you are the mama doing it for everyone else and I suspect that was the proverbial straw that broke the camels back here. But one way or another I think it was going to happen.
I have seen healing in some areas since starting GAPS but I think my inability to eliminate toxins has really been holding me back. It is funny because now those test results that many years ago had Dr's asking me how I could be functioning so well with such terrible results look pretty good but I feel pretty lousy.
Patty,
Have you read anything by William Walsh or Dr. Woody McGinnis? There was concern in the past for high methylators and low methylators and Dr. Walsh says the focus switched to oxidative stress. Examples:
http://www.biobalance.org.au/articles/17
http://www.biobalance.org.au/_downloads/toronto-presentation-10-09.pdf
Also what do you think of the salt protocol for Lyme's?
Anne
Anne,
I have not read either of those. Thanks I'll look them over.
The Salt/C proticol has helped some people a lot. I can't take the C because of my oxalate problem and I did try the salt for a bit but it didn't seem to work for me although my adrenals do like me to keep taking in plenty of salt.
Thanks for the reply. Let me know your thoughts on the Zinc cream. For the other supplements did you just wing to figure out a dose?
I take my fclo religiously but my d is only at 33…. Frustrating.
From what I understand, FCLO contains mostly vitamin D in the form of D2 which leaves the blood quickly, so it can be helpful to supplement with D3 in addition to FCLO.
Anne,
I have read both of those now as well as some other info on oxidative stress. As far as I can understand it this is two ways of saying the same thing. If you have mthfr mutation(s) then you have an impaired ability to detoxify and repair oxidative damage. The point of treating MTHFR mutations is to give the body what it needs. Methylation is the process that reduces oxidative stress on the body. Substances like glutathione (which is produced in the liver and is hampered by mthfr mutations)clean up toxins including free radicals and neutralize them so that they don't do any more damage.
It is my opinion that this wouldn't be a problem if we lived in a pristine environment and had a diet of 100% whole local foods. Unfortunately few of us can achieve that so we need to figure out how to make up for what we are missing. So yes antioxidants are vitally important and are abundant in the GAPS diet that I follow. Reducing oxidative stress is vital and that is partially achieved by the Low Oxalate Diet. Also the body makes oxalate while under oxidative stress so that isn't a good thing to promote. But if you don't have the building blocks of the detoxifiers then you will be stuck in your oxidative stress. B6, mb12, 5mthf, TMG, E, C, zinc these all help and it doensn't really matter if you say it is because of a MTHFR issue or an oxidative stress issue.
I take and educated guess on the supplements. So I look at normal dosage and then I judge how I feel on that dosage. How much FCLO are you taking? If you have a damaged gut you need 1-3 tsp daily depending on other factors. When I am sick I take 1-2 tsp at every meal in a day. It kicked a sinus infection in 48 hours (that I had been neglecting till it got bad because of the business of the holidays).
Hello,
I am new to this blog. I also have some health issues and have learned so much from your postings. Could you tell me what type of Dr. you go to? Is it an internist, Family Practice? I live in Texas and it is difficult to find a dr. in this area.
Thank you
Our Dr is a family practice Dr. I suggest asking around among your friends that are alternative minded who they see. Just keep asking and looking and eventually you may find someone good. There are also websites where people discuss alternative approaches to health. Those can be good places to ask for Dr recommendations. One of those websites where I have gotten recommendations over the years is called mothering.com but there are others out there.
Hi Patty, you have really been through the mill with your health. In reading your story I can relate to a lot of what you write. It is two steps forward, one step backward and then one day whoosh! Back thirty steps! LOL! I have to laugh or else I would cry. In your leptin reset post it seemed you had made some good progress, and being able to transition from HC to Isocort is an improvement, yes? This is what I have to do, just keep reminding myself of the little improvements along the way. Thanks for sharing with us.
I take 2 tsp Fclo at dinner. Should I take more???
I think that is generally a good dose for a GAPS person. Nursing and pregnant moms may need 3 tsp a day. Some people take just 1 or two capsules a day and think that should be plenty but it takes 10 caps to equal 1 tsp so clearly it isn't nearly enough.
Hi Starlene,
I am seeing improvements and yes switching to less medication and a lower dose is moving in the right direction indeed. I just want more energy and for my muscles to not ache all the time and to be able to count on feeling good most days. Posts like this help me to remember where I was and how far I have come.
Oh my gosh Patty, the Lord guided me here to your post!! I just read today an article about a woman who is treating her limes disease with a raw milk fast and says its the only thing she has found to work the four years she's been trying to treat it. Imagine not having to prepare your food for a few months!! lol My heart just goes out to you and all you deal with on a daily basis. I have started integrating a few GAPS things into my diet and already feel amazing, I pray you could experience that too. Look around this site because there is also a day by day account of someone going on this diet too. God Bless! Jeannie
http://www.thehealthyhomeeconomist.com/the-milk-cure-for-healing-lyme-disease/#more-8668
Thank you Jeannie. I read that post yesterday. It is very intriguing and I am considering it.
Patty,
I’m so sorry for your health issues- you are doing an amazing job healing your daughters and yourself! I really appreciate all of the information and recipes you have shared, it’s a great help to many. My daughter and I just started the GAPS diet to heal damage to our guts from lyme disease and mold exposure (identified through our inability to heal from lyme). I just wanted to mention that if there is any mold involved, healing lyme is very difficult and some people have a harder time with lyme due to genetic inability to get rid of the lyme (and/or mold) toxins. If you have any interest in the genetic connection, Dr. Shoemaker has written a couple books and has a website.
God Bless you and your family!
Sally,
Thank you. I will look into Dr Shoemaker. I have a mold tester but I haven’t gotten it done yet. I’m intimidated by the process. I need to just do it since I already paid for it.
Hi Patty,
I know you posted this a while back. I just happened along it tonight. I sympathize with your trials fighting the lyme infection. Have you heard of Dr. Dietrich Klinghardt? His specialty is lyme and autism. He has a very comprehensive protocol that addresses the things you metioned. In case you don’t already know of him, here are a few webpage you might find interesting.
A lay person’s article:
http://articles.mercola.com/sites/articles/archive/2009/08/04/Dr-Klinghardts-Treatment-of-Lyme-Disease.aspx
His document where he outlines his protocol…
http://www.klinghardtacademy.com/images/stories/Lyme_Disease/klinghardt_biological_treatment_of_lyme_disease_protocol.pdf
A lengthy presentation he gave a few years ago about HPU:
http://www.lymehub.com/info-on-kpu-pyrroluria.php
I hope this might help you in some way…Eleni
Thank you. Yes I am very familiar with Dr Klinghardt. Thank you for sharing that. I learn from people sharing new ideas.
Hi Patty
Can I suggest some things for you. A bit over 12 months ago I had a total breakdown, couldn’t walk, talk, eat, sleep, breath, think for many many months. Very slowly and through much prayer I found light and am almost back to 100% healthy again. I did not even realise that I had been going down hill the 2 years prio to the wipe out. Anyway I wanted to pass on to you the things that really worked.
1. Prayer and confessing the promises of healing and protection from the Bible.
2. Colon cleanse. I used Aim herbal fiberblend. This stuff is worth its weight in gold. It can be used by any type of gut problem including chrons . You have to get the gunk out of your colon and intestines. And believe me, it will be there. I have always been a slim person and I passed parasites and old old old stinking gunk. Once you get the gunk out the body can detox better and the heavy metals and toxins begin to pass out like they should. It takes a massive load off the liver.
3. Parasite cleanse. As stated above but I am mentioning it because some colon cleanses do not kill parasites as well but Aim’s does. You can also add in Aim’s Para 90 capsule for 1 month. The fiberblend you take 1TB 20 mins before breakfast and again before night meal in juice for 3 months , if your still passing yuk keep going. otherwise drop back to 1tsp 2 times per day in juice. I cannot stress this enough to healing the gut. I tell you, you will heal your gut. I tried lots of other things likes gaps too but it was not until I started killing parasites and cleaning the gunk did I begin to get better.
4. Diotomaceous earth. If you do not want to use the above products then you can simply use DE food grade 1 TB in water every morning to clean and kill parasites and remineralise the body and build it back up again, safe for children too. check out http://www.earthworkshealth.com/human-use-testimonials.php for testimonies on this amazing natural product. I don’t get paid for saying this lol
5. upper cervical chiropractics or Chiropractics that restore the “arc of life” the neck curve. http://www.bodybrilliantchiropractics.com will show you the type I mean. This is not the older style relief chiro. every part of your spine is connected to your organs through the central nervous system including your immune system. Getting your subluxations fixed will bring your body back to working and it will throw off the lymes. This type of chiro is vital for restoring health. your children will greatly benefit from it too.
Please look into these things. I tell you I was such a mess I thought I would die very day for many months, just taking a breath took all my strength. Today I sing in public and and I can climb stairs again like a young person.
All the best.
Thanks
I have tried many of these things. I do love hearing of others stories of healing since I always glean something new from it. We each have our own path I have found and what works well for one does nothing for another. It is so frustrating and yet proof that we are indeed very complex creations.
True Patty. I tried not to make my comments tooooo long
but what I should have put in there was that with each of these cures I actually had to try them over and over and on about the 4th - 5th “I”m gonna stick with it this time” it worked. The thing was I had so much toxins in me that at each try I just got sicker and weaker and it was really hard for me to believe that I was actually healing instead of getting worse. But as you keep cycling towards them it finally begins to go in the right direction. I probably had months between each attempt because it took that long for the die-off to settle down. But now on the other side of it I can look back and really say to people, keep cycling towards doing the cures . Just keep getting up and going for it. I don’t mean with Gaps but with the colon clean and diatomaceous earth and “arc of life” chiro. If your chiro did not take your X-ray (which is super low radiation 1/200th of a 1 hour plane flight) and then put you on a 2 treatments per week for 3 months then 1 for the remainder of the year and then X-ray you and show you your arc of life healed then they were not the chiro I am talking about. My comments above do not even come close to describing the hell I was living in every second of every day. This will work for you, just cycle towards it and those toxins will get less and less. Oh and another thing that really helped. Dr Claire Weekes book “self help for your nerves”. Once toxins build up to the stage that you are feeling like fainting in public and have chronic fatigue symptoms etc it has actually causes a thing called “sensitisation” to the nervous system and Dr Claire is the best at giving you an understand of that and how to heal from it. This can be the missing ingredient for a lot of people because it really helps you as the detoxing can take so long and the nerves and system take so long to heal. My heart went out to you when I read your story because I knew so much of it and worse, but this will work for you but it takes time and it can take time to get to the point of being able to continue it. That is where the changes take place. The http://www.watercure2.org was something else I also used and people have had success with just that with lymes. I just wanted to list for you the things that were essential. Health begins in the colon, sickness begins in the colon……. that is such a truth that I found very hard to believe but through trial and error and then retrying and retrying till I could stick with it… it really is true. I wish I could sit down with you and talk but I am on the other side of the world I think. I do wish you all the best and encourage you,,, keep cycling to the goal. You will win. 