Posted 2/20/2015 3:19 PM (GMT 0)
Hi everyone - I'm sorry I haven't been on more... I do plan to come back and help others, as this site, and those who came back and helped me, are/were a God send.
So... I think I am out of the woods... I haven't had a "bad day" since mid-December. I'm feeling very well - still have the occasional "weirdness", for instance, one day at the beginning of February I had a day of itchiness and insomnia, but over all... I feel very well, and I am even running again and I’m off the antibiotics!
My little boy is doing well - he's on an herbal & homeopathic protocol only (his sx are/were mild - chronic cough, frequent colds/infections, and eczema like rashes - sad isn't?!?! That those are "mild" sx of lyme... but we all know how bad it can be/become). He's had herx/healing responses to the herbs and the nosode series and seems to be doing quite well.
My back story:
I'm a 30 year old female, I have a 2 year old son, lived in Wisconsin at time sx began, have 3 dogs and a cat. (Prior to this had minor health issues: asthma, allergies, occasional GI upset, and diagnosed with hypothyroid in 2008)
October 2013 started having insomnia and a strange crawling on my legs, then occasional burning in my limbs – all of this 2 weeks following the flu shot (coincidence??).
December 2013 came with shingles, bladder infection, neck pain, insomnia, migraines, and more.
January same.
February **** hit the fan! Muscles twitching, weakness, joint pain, crazy insomnia, ringing in my ears occasionally, tightness in my throat, & all of the other sx from above (minus shingles and bladder infection)... I'm sure there was more but this is the short version. :)
March we moved to S. Florida for my husband’s job. (That was fun…. Not.)
I went through the ringer trying to figure this out (like most of you), negative lyme tests, mri of spine that showed facet degenerative arthritis throughout, 16 doctors, a fibro diagnoses, and then finally in April 2014 I found this site while researching Fibromyalgia, and then I found my LLMD – Finally had a positive Lyme PCR urine test through igenex.
** My ANA went positive and Sjogrens (SSB) went positive after beginning treatment for LD. (lovely )
The first 4 months I was on abx and vitamin supplements and had some okay days, but then I think the high doses of abx with very little support for my body caused me a major setback, or maybe it was a confection that came roaring out but either way at the 4 month mark I suffered another "crash" - extreme tendon pain on the entire left side of my body... I could barely walk. So we switched abx at that time, began Buhner's herbs, found myself an herbalist, and increased treatments with functional medicine doctor (iv PC/glutathione and Vitamin C/myers). But at no time in the first 4 months did I feel great.
In September 2014 I found out that the arthritis that had been seen in my spine originally was gone (2nd MRI). Awesome (and crazy!!) news!!! I also found out around this time that my son had the Lyme antibodies - not so awesome… His igenex western blot was positive.
In October 2014 I continued herbs/IVs and stopped abx for a short time until I was advised by both doctors and my herbalist to go back on the abx for awhile. I'm feeling pretty good - still not perfect by any means but seeing major improvements.
We started my son's treatment with the herbalist – He is doing well.
November 2014 my son turned 2!!! His symptoms (previous sx) are/were: rashes (look like eczema), chromic cough, used to get frequent colds, and also had MRSA in Oct. Since beginning treatment with herbs his rashes are gone and he seems to have no sx.
Felt pretty good other than a setback due to massive stomach pain/upset – figured out it was one of the supplements I was taking.
My ANA returned to NORMAL (!!!) No more sjogrens! Hooray!
AND I started hyperbarics at the end of the month.
(copied history from my last post: https://www.healingwell.com/community/default.aspx?f=30&m=3284047)
Then in December I began feeling very well and back to myself on a consistent basis.
The things that helped me the most:
Diet – lots of vegetables – juice or smoothie every day, small amounts of fruit, limiting processed foods, no gluten (or very little), no alcohol (although I did drink at 2 events during the thick of my treatment and although I didn’t feel well at all the next day, it didn’t set me back horribly… Just have to be honest) low carb, low sugar, and meat - I was a vegetarian prior to my health issues and I have gone back to eating it – quality humanely raised mainly poultry
Probiotic – high quality refrigerated
Glutathione (oral (liposomal glutathione) and IV if available)
CoQ10 - for cell support
Candibactrin-AR from metagenics currently- I think it’s a good one for both lyme and Candida, and I have also used Young Living oils.
Herbs – I’ve used various herbs but I like Buhner’s protocol and continue to do a variation of that.
Stress management – yoga and meditation (visualizing myself being HEALTHY again)
Nattokinase (sp?)
DETOX!! Baths, charcoal, sweat – saunas/exercise, chia/flax seeds in smoothies, juicing, etc.
Antibiotics – I did take them for 9.5 months – I did not take tindamax or flagyl (I hope not to have to). I definitely think the abx helped me get the Lyme under control, but I think the alternative treatments and I have it from here (fingers crossed).
Hyperbaric oxygen - if you are able to get a scrip or find a (somewhat) affordable facility it is worth it. I have done 40 dives in a hard chamber at 2.4 ata and it has helped me tremendously, but I know it is expensive... Another way to increase both glutathione and oxygen is exercise – so if you are physically able to do some exercise it will help over time.
AND last but not least: Time – I know when you’re this sick all you want is to feel better, but unfortunately it just takes some time to kick this NASTY thing…
If you are on this forum you are one of the lucky ones. I hear stories daily about people who have gone misdiagnosed with various neurological and autoimmune diseases for many years. You know what you have and you are treating it – you will get better.
ANOTHER LAYER OF MY ONION: At the beginning of the month I found out I have an MTHFR double mutation on c677t… Which, from what I understand, is about as bad as it gets when it comes to detoxification. So of course I was bummed, but I started MethylAssist: it’s 90 pills – one pill a day – $40 supplement to help with methylation – each person is different and I may have to increase or decrease depending on how I feel, but just wanted to give you an idea of the treatment. I also avoid folic acid (in many fortified cereals and breads – pretty easy to avoid if you’re gluten free anyway. I push myself to eat extra greens – I usually have a juice or a smoothie in the morning with a lot of greens – spinach or kale, and a big salad for lunch with a rainbow of colors, and then I allow myself a larger range of food for dinner (still gluten free, low sugar, etc.), I also take fish oil, and nattokinase to help with the mthfr issue.
Due to this my Dr. and I decided to do a provoked urine test for heavy metals, and sure enough some came back quite high... I am thinking of doing a round of chelation to get those levels down.
I think everyone with chronic lyme should have MTHFR testing… Actually anyone with any kind of chronic illness.
In the beginning I had people tell me to get tested but I didn’t… I just had too much on my plate and honestly had so many questions at my appointments I didn’t even remember to ask, but I wish I would’ve known sooner. It is an important piece of the puzzle, and I now realize I need to put a lot of emphasis on detox to be well.
I think it is likely that many of us have mthfr mutations and that’s why it is difficult to kick the bug and recover – Not that it can’t be done, but it is just harder for us. From what I have read, about 50% of the population has some type of MTHFR mutation – it’s just some are worse than others.
I hope everyone gets tested because it is best to know your cards and take appropriate supplements – which will help considerably.
My whole family is now going to do the 23andme test. I will let you know the results, if there is anything of particular interest, when I have them.
I know this was LONG (!) thanks for sticking with me. I apologize for any spelling/grammatical errors – I had a lot of info I wanted to share and I haven’t even had breakfast yet.
I wish everyone the best!
My hope for all is that you get MTHFR testing done, AND that you believe you will get well, because you will – you know what you are dealing with and that is half the battle. Even if you have to “fake it till you make it”. Believe it and it will be. Meditate for 15 minutes every day and just visualize yourself happy and healthy again. I know it is not the “cure”, but doing this has really helped me.
I feel like myself again, and it has been a long road for me. I have been struggling since October 2013, which I know is short compared to some, but it has been a long journey. It takes time. My health was really bad and there was a time when I couldn't believe I would be able to fully recover from this, but I have.