Severe Late Stage Neuro Lyme Questions

Daff,

This is a strange disease and you can make progress fighting Lyme or one of the co-infections, then hit a plateau and need to change up protocol, or have one of the co's become more prominent and cause set-backs.

I had a lot of head pressure thru my 5 years of treatment and it was one of the last sx to diminish. Your head pressure sounds like a herx and you need to detox. Try some Alkaseltza Gold and see if it helps. You can also take a short break from ABX and wait for the toxins to diminish.

For supplements... have you tried alpha lipoic acid or turmeric to help with neuro sx and inflammation? I also suggest trying some chlorella to bind the toxins, or try Pinella to detox the brain.

I know that supplements can often cost more than ABX, and if funds are limited maybe rotate out some you my be taking for a while and try a new one. Rotating supplements can be very beneficial to the wallet.

Thanks Tick and Sarah:) Your messages really helped.

I am being treated by a very knowledgeable doctor but he is not expensive and so is VERY busy. it takes months to speak to him and he is not even in my continent. Due to years of trying to treat whatever this was, I have little money left to see the big wig docs. I have no American insurance (Canadian)

I took pinella for quite a while and didn't notice it helping. I have tried Samento but it made me sleep all day (even just 1 drop 3 times a day) and I am already able to do so little, I had to stop it.

Another problem is my severe leaky gut. I know that might be contributing to my brain issues. I was given a special diet (after food tolerance testing) which I am doing reasonably well on (I do cheat but am doing the diet maybe 85 - 90%). I am also on quite a few gut supplements.

I am also on a small amount of immunoglobulin because I cannot afford a higher dose.

However, recent testing showed my gut is just as bad as ever.

I am trying to take Baking Soda between meals but end up doing it once a day only. There doesn't seem to be enough time to do it all with all my sleeping and severe fog, it is all so confusing.

My brain really started to get better on IV rocephin but had to stop early due to severe diarrhea.

I am now on 2 oral antibiotics and have been on them for about 6 months. I think there was some improvement for a while so the doc is keeping me on them.

Thanks:)
Daff

Post Edited (Daffodil1234) : 4/9/2015 9:59:14 AM (GMT-6)

Daffodil - Are you in Western or Eastern Canada?

If you're in Western Canada, we have a LLND in Richmond, B.C. who treats lyme disease. I'm pretty sure you would already know this if you did live in the West...but just in case.

My appointments are $80 for a half hour.

No, Daffodil, it is not hopeless,

But it does take some hard work, perseverance and holding on when things get terrifying and impossible.

I had a 25 year infection with neurological involvement when I started treatment. The herxes were sometimes worse than the symptoms and as treatment went on new symptoms cropped up.
Frankly, the lethargy and sleeping on the couch you mention seems pretty benign! (Not to dismiss the awful feeling of powerlessness like that, to be sure).

If you are having trouble coping with a whole drop of any tincture, put the drop in some water, stir well and then drink only a small fraction of the water (a quarter, an eighth, even less). Work slowly up to the full drop. And start with once a day and work up to the three times a day. But keep trying.

I didn't know much about detoxing when I first started my treatment and I wish I did, because that would have been a big help. My husband totally mocked me when I started it, but soon stopped when he saw how much better I tolerated my medicines.

The real key to getting well again is in your head, I feel. You need a reason to get better. It can be quite simple (you don't need to save the planet), and should be something easy to focus on when the times get tough. For me, I decided I wanted to make my granddaughter's wedding dress (she was a baby when I started treatment). She may never marry or she may decide to elope, but it doesn't matter, that vision of hope and me being capable was what got me through the dark and difficult times.

Something else I struggled with through the course of my treatment was the process of re-inventing myself. I'd gotten ill in my twenties and here I was turning fifty. How was I to know what was my personality and what was the disease? It felt at times that by eradicating the symptoms I was actually losing my identity. I decided that was okay, and was able to dig deep and find the core of who I was without Lyme and co., but it took some doing.

I am functioning at 99% wellness now and am in the final stages of treatment. We are doing challenges to ferret out any of the last of the bugs in their hiding places. It is so good to be back to the business of living again.

I hope you find your way to getting well again soon as well.

All the Byron White formulas have to be ordered through a practitioner. A-Bab is the only one I have used so far.

Glad my story can help!

Thanks, everyone. Forum Moderator..your story made me so hopeful. I also got sick in my early 20s and am now mid40's...have all the same struggles with finding meaning in life, etc etc. I did not marry nor have kids, so fear of loneliness is also a big one for me.

I would love to ask you a lot more questions but am severely fogged right now.

I actually got sick after "mono" and have Chronic Fatigue Syndrome. I tried all kinds of things and have spent everything my mom has on other treatments (some very toxic) and still remained sick. Then, I saw a famous specialist who has come to believe that CFS is Lyme because most of his patients end up positive on the newer tests.

Several patients I knew have died over the years and it is just so hard to keep positive.

Thanks again for your story and I will be sure to go very slowly with the Houttunyia. Hope you will be around when I can ask more questions!

Thank you
xox
Daffodil1234

Thanks so much:)

Anyone....do you know if Houttunyia needs to be taken on an empty stomach? I cannot seem to find the info online.

Just starting this medicine even though I cannot tolerate Samento. I will be sure to start very slow and take 1/2 drop.

Thank God I found this forum!


xoxo
Daffodil1234

Post Edited (Daffodil1234) : 4/16/2015 12:03:29 PM (GMT-6)

Thanks, Girlie:) I assume its 30 min before a meal?

I didn't use Buhner, but I did use teas and tinctures, and I ate when I needed to eat. The intention of my practitioner when she told me breakfast, lunch and dinner was just to denote the time of day to do something.

Thanks for the quick replies!

I also had success with IV rocephin....for the first time in decades, I was starting to use my brain again. I was crying with joy....but it didn't last when I got off the drug.

Food testing shows I should stay away from yogurt so I do not eat it. I tried Kefir but couldn't stand the taste.

I could not tolerate probiotics and still cannot - they make the diarrhea worse. Tests show I have leaky gut and I have spent 2 yrs trying to change my diet and taking gut supplements but it didn't work....testing was the same.

They tried to give me 1/2 dose Rocephin but I couldn't tolerate that either. I tolerated the Azithromycin a little better.

One researcher told me that Rocephin is so broad spectrum and powerful, it might have been targeting translocated gut bacteria or something else, instead of Lyme. who knows....

Not sure if I mentioned this before, but despite my inflammatory markers being much worse, and my neuro symptoms being especially bad these days, recent testing did show that my CD57 has gone from 48 to 105.

Just so strange that I would get so much worse symptomatically...the neck cramping...head swelling is unbearable!

xox

Daffodil1234

 

Hi Traveler.

Well, this doctor is integrative and I have tried many things to heal my gut. I have had food tolerance testing, where inflammation is measured in response to foods....I am gluten free, too. I take gelatin, zinc carnosine, digestive enzymes, L-glutamine. I am just not sure what else I can do about my gut.

I have very low secretory IgA which is not helping. My doctor says this can be genetic.

I understand many Lyme patients give up dairy....do you think I should try that? The testing showed I can have cheeses so I can try to give that up. Also, I do cheat on my diet sometimes but my doc says that is OK as long as overall diet is healthy.

When you are this sick and have a very hard time shopping and cooking, it is so hard to come up with things to eat!

Also, all the tests the naturopaths do to check for leaky gut are normal....its only when my doctor did the soluble CD14 test, that the leaky gut showed up.

Thanks:)

xox

Daffodil1234

Thanks, Traveler!

The tests showed I should not have whey protein....that is why I am allowed cheese....but giving up tea with milk has been a huge challenge.

I do have SIBO. I have tried Xifaxan and it helped a little for a little while but that's it. I suspect I have had this a long time.

Not sure what's going on there....bowel disease does run in my family and I had IBS long before I got sick.

Some people with CFS/Lyme(?) are helped with fecal transplants but that is beyond my means right now.

Thanks!
Daffodil1234