How long does it take?

hello. i have been sick for 22 yrs and in treatment for 3. i am still only marginally better. my brain is extremely foggy all the time. i am starting to wonder if there is any hope.

i have not posted much on this board but i remember hearing from a woman (perhaps moderator?) who had been sick for over 20 yrs and said she was 99% recovered. i would love to speak to her or anyone else who thinks there still might be hope.

i am in my 40s and i hear that at that age, recovery is unlikely if you have been sick too long. someone said you can get to maybe 50% max.

i had a brief period where i felt i was much better but relapsed again. my brain is worse than ever.

currently, i am on oral antibiotics and houttunyia from nutramedix. i am also on some supplements and try to stick to a low-sugar, gluten-free diet.

any comments would be appreciated. thank you
daffodil

Hi Daffodil!
I don't know if you were thinking of me or not. I've been ill since the age of 7 - and that was 45 years ago. I first started with RMSF at age 7, chronic Bartonella symptoms at age 8 and chronic late stage symptoms of Lyme at age 9. First effective treatments weren't found and started until 2010 - when I was 47. So whoever said that you will have a harder time healing if you are in your 40's was wrong. I healed a 40+ yr old Lyme infection in 12 months, even though I was still battling the other tick-borne infections and the viruses that I have. That's not slow healing with these infections!!

YES YES YES - there is always hope!!! You just have to find what will work best with your body to help you heal!! That can be very difficult - I happened to "fall into" what helped me heal, as there are no LLMD's in my state and I was too sick to travel out of state to find one. I found only one practitioner that was willing to even see me and she was the one that helped me heal.

If something isn't' working for you, stop that treatment and go on to the next - you will find what works at some point. It may well be a mixture of herbs, abx and other natural treatments.

As Girlie said, detoxing play a crucial role in our healing also, so please do all you can to help your body detox. Using many different forms of detoxing can help ensure that your body is using all of it's detoxing pathways as well as possible.

I also believe that we need to support any part of our body/systems that are struggling so that the body can concentrate on healing rather than the struggle to function.

We need to raise our immune function as well - and there are many ways to do this, but it's part of the actual healing that has to take place.

You can begin to tell us what all is going on and we can hopefully help you sort it all out enough so that you can begin to make progress again.

hi all. thanks so much for your replies. i am indeed in canada. this all started 22 yrs ago when i contracted mono. my life was ruined that day. i just got sicker and sicker. my mom spent all her savings so i could travel to US to see all kinds of expensive doctors. i took huge amounts of toxic meds, including antivirals and even HIV meds, for years. the diagnosis was CFS.

then, around 3 years ago, i went to belgium to see world reknown CFS specialist. at the time, there was a newer test out for lyme called LTT ELISPOT. even though i had tested negative for years, i was suddenly positive with this test. i now see this doctor once a year.

a couple of months ago, after almost 3 yrs of treatment, i had a several-week period of feeling great, for the first time in decades. i had bursts of energy and even my brain was better. i was walking miles like i had 22 yrs prior and i was so happy. then, i relapsed.

i am on 10 g immunoglobulin per month, and 2 oral antibiotics (these are changed periodically). i have tested positive for SIBO even after implementing a diet (although i cheat on the diet a fair bit, sadly).

i am also on various supplements such as injectable b12, glutathione, coQ10, etc. due to my sleeping so much and foggy brain, i am unable to handle a very complicated regimen. i try to drink a lot of water.

in the past, i did a couple of months of IV antibiotics. the rocephin began to clear my fog, which was a miracle, but i could not tolerate the drug due to severe diarrhea which i was worried would become life-threatening. i also get diarrhea from powerful probiotics so i do not take them.

i cannot even handle 1 drop of samento..it makes me sleep the entire day.

my doctor doesn't talk much. when i ask, he is optimistic but i am not sure what to believe. he said i would notice significant improvements at the 4 year mark.

my mom is now 80 and not in great health. i am just so worried i will be alone in the world, in my mid-40s and unable to care for myself unless i improve soon. i just don't know what is going on..why this is happening and what mono has to do with the whole thing.

i guess i am just writing for support and hope. i would love to communicate by email too, if possible.

for those who recovered after this long, how long does it take?

thanks a lot
Daffodil123

Post Edited (Daffodil1234) : 6/28/2015 2:23:39 PM (GMT-6)

hi girlie. this doctor is always optimistic but i am not sure it is true. from one of his videos, i think he said those over 40 who have been sick very long might recover to maybe 50%. he himself is a CFS specialist who was surprised to find most of his patients testing positive to lyme via the LTT test.

i am not sure if i communicated with a belgian person or not..i have posted hear a few times only and my memory is almost non existent :-/

thanks:)

I'm thinking you should try and see a LL Dr. on a regular basis - once a year isn't enough.

Could you see a LLND in Ontario?

Well, you could - if you want- let us know what your protocol is...and there's lots of knowledgeable people on here...someone may have an idea to help you.

Also, are you doing lots and lots of detoxing? That is crucial to healing.

what brand of Houttuynia are you taking? Is it one of Buhner's recommended brands?

ok this is the current protocol:

Diet - this is based on a food tolerance test.
Clarithromycin 250 mg BID
Tetralysal 300 mg twice a day (this medicine was not available in North America so the doctor said to take Minocylciine 100 mg once a day)
B12 10 mg twice a week, injection
Omega 3 (i take 1200 mg twice a day)
Daosin, 1 every morning (this is some kind of food histamine blocker which does not help me)
Gammanorm every 6 days (this is part of the 10 g a month immunoglobulin i do subQ)
Baking soda in water between meals (I rarely remember to do this)
Arcoxia (european anti inflammatory)
Liposomal glutathione, 1 tsp in water before breakfast
Houttunya 10 drops 3 times a day, by Nutramedix (i think this is part of the cowden protocol but i am not sure)
L-Glutamine
Drink 2 L water per day

hi girlie. i think he is giving me a lower dose now because in the past, i had diarrhea and various problems on some of the drugs. also, he mentioned that i am a small person (5'1"). i do not think he will be increasing the dose but now that i know that they are prescribed at a higher dose, i am going to ask about this.

i have been on rifampin, minocycline before, rocephin, azithromycin, doxycycline (which i could not tolerate at all), clarithromycin before, ceftin, and there was another one but i cannot remember it...but that one didnt help me at all.

i can no longer tell what is helping and what is not. its all a giant blur.

thanks:)

So for detoxing - you're drinking lots of water; taking glutathione, and I think the baking soda is for detox, too.

You could add some things....add some fresh lemon juice to some of you water, take warm epsom salt baths, dry brush your skin before the baths.

what about milk thistle seed? Are you taking that for your liver? - It is not for anyone who has a ragweed allergy.

Thanks Marie!

May I chime in-please?

I've had the same exact question about whether I'll truthfully get better.

My 2nd Lyme test last June of '14' was positive and then 3rd Igenix was negative May 2015! My LLND was surprised that I still have muscle & joint pain & stiffness, fatigue, brain fog, poor memory & concentration and surprised that my CD57 went lower after 1 year of herbal Lyme tincture....

I also tested HIGH for mercury,lead, and aluminium toxicity which means that I can take all the antibiotics in the world but with heavy metals AND reactivation of the virus that causes the childhood disease known as rosieola= HHV6:

Those TWO together have basically disabled my immune system. HHV6 has been recently discovered to be the virus that actually stirs on HIV which results in AIDS! I'm HIV negative, but the heavy metals toxicity alone can suppress the immune system-I suspect that's what CAUSED my HHV6 reactivation....

Then year after year, as I was exposed to infections of all sorts, my immune system couldn't and still cannot, fight them off!

I read a VERY good book, based upon the scientific studies of Dr's Knox and Carrigan=the World's leading experts on HHV6- book is called, 'The virus within'. There's a short chapter on their theory of HHV6 causing "gene re-shuffling", which would explain the MTFHR gene mutation=you cannot detox!

My sister, diagnosed w/Lyme & Co's in 2008; in remission but still symptoms; has just told me she has the MTFHR gene & that I likely do also. That news alongwith reading the truth about HHV6, has scared me S------S!

My treatment goes round-n-round-n-round

Daffodil - the elispot you're talking about - if it doesn't test for antibodies, or finding the bacteria in the blood...do you know how it works?

So, it can be done here in North America and the sample sent to Germany?

Girlie - some info about LLT elispot: www.arminlabs.com/content/forms/elispot-cd57-information.en.pdf