New test results and worsening symptoms

[Daffodil]

Hi All. Just wanted to give another update.

I have been on antibiotics for Lyme for 2 1/2 years, which i started after about 21 years of illness.

I seemed to improve somewhat for a while and my test results improved too: inflammatory markers, nagalase, etc...all better.

Well, 2 months ago, I started to feel worse. Then, a few weeks ago, my neuro symptoms suddenly started to get MUCH worse and the small gains I had made are all gone. It really is beyond awful with my head feeling this foggy and swollen.

My energy is still a little improved from where it was in the beginning.

I got some tests done recently, and they are all worse! Everything is much more abnormal than before.

Does anyone know if this might be a normal course of treatment or does it just mean the bacteria has stopped responding to the drugs?

I know it is impossible to know for sure.....but would love any opinions as to why this might be happening.

Thanks a lot
Daff

 

[Hanna]

@Daffodil I am so sorry that you are feeling worse, despite all your treatments.

I have no answer to your question.
It seems to me a lot of time 2.5 years without a clear positive outcome, though I know a lady from France who started to improve only a little bit after 18 months on ABX and now, after 4.5 years of intensive treatment (yes 4.5 years!) she is asymptomatic (except hyperacusia). She was very very ill, more than house bound, with an "alzheimer-like lyme presentation".
She has resumed working now, and is very active and is in her late 50's.

With this illness, everything seems possible...

 

[Apple]

Sorry you are feeling so awful
Were you on oral abx or iv? Maybe it just hasn't been fully killed off yet. Lyme and co are the masters of hiding themselves and avoiding annihilation.
Where are you and your doctors located?
Stay hopeful.

 

[Daffodil]

thanks apple, hanna. it helps a lot to hear a positive story.

i am seeing dr. demeirleir and located in canada. i have taken IV antibiotics for a while but have been on oral mostly.

he is very busy and i will likely not be able to talk to him until some time in june.

the tests show my leaky gut is still very bad and my D-lactate bacteria is high also.

i have been doing the diet reasonably well (Except for tea+milk) and taking all kinds of supplements but it doesnt appear to be helping.

i just started taking gelatin...

xoxoxo

 

[Mary]

@Daffodil - I'm really sorry you're having such a rough time.

You probably already know about this, but are you taking l-glutamine? It's supposed to be excellent for healing a leaky gut.

Also, if stomach acid is low, it can allow overgrowth of unwanted bacteria. There's a baking soda burp test which is supposed to be an indication of one's stomach acid:

On an empty stomach, drink a glass of water (about 8 oz.) into which you have mixed one-quarter teaspoon of baking soda (sodium bicarbonate). See how long it takes you to burp. If you haven't burped in two minutes, your stomach acid production is low.

I've been taking betaine HCL for several years. I slacked off the last year or so and just recently had a bout of an intestinal something, am not sure what it was! but started back up on the betaine HCL and am recovering. Many people with CFS are low in stomach acid. I don't know if this holds true for lyme, but could be.

 

[Daffodil]

@Daffodil - I'm really sorry you're having such a rough time.

You probably already know about this, but are you taking l-glutamine? It's supposed to be excellent for healing a leaky gut.

Also, if stomach acid is low, it can allow overgrowth of unwanted bacteria. There's a baking soda burp test which is supposed to be an indication of one's stomach acid:

On an empty stomach, drink a glass of water (about 8 oz.) into which you have mixed one-quarter teaspoon of baking soda (sodium bicarbonate). See how long it takes you to burp. If you haven't burped in two minutes, your stomach acid production is low.

I've been taking betaine HCL for several years. I slacked off the last year or so and just recently had a bout of an intestinal something, am not sure what it was! but started back up on the betaine HCL and am recovering. Many people with CFS are low in stomach acid. I don't know if this holds true for lyme, but could be.

thanks, mary

i have been taking L Glutamine for a while now. i have finished one 454 g bottle so far. I take 1 tsp a day.

i was told to take baking soda in water between meals. i am trying but between all the sleeping and the other supplements, i am lucky to do it once a day. also, i am worried about my kidneys which sometimes show a little low filtration rate and i read baking soda can cause problems with that....but maybe you need huge amounts to cause an issue.

i have never heard of betaine HCL before...i am going to look it up now.

Thanks a lot
daff

 

[Daffodil]

I just looked up betaine HCL and it said that one should be careful with it while taking any anti-inflammatories, which I am taking.

between the antibiotics and, anti inflammatories, I am not sure how my gut can even improve! I am unable to tolerate probiotics.

xoxo

 

[snowathlete]

Really sorry you are feeling worse. I know how frustrated you must be. You've been on abx a long time, so I wonder whether it will not improve more without some kind of change. Abx do your gut flora a lot of harm, so unless there is some plus side maybe it's not the best idea to continue taking them?

 

[Mary]

@Daffodil - that would be tough for your gut to improve with the antibiotics and anti-inflammatories.

Why are you taking baking soda? That will reduce stomach acid, again contributing to bacterial overgrowth.

I read the warnings about betaine HCL and anti-inflammatories. However, if someone has low stomach acid, I don't think betaine HCL should hurt. My sister has rheumatoid arthritis and was on quite high doses of ibuprofen and Tylenol, which, as you know, are hard on the gut. And she was also taking betaine HCL because of low stomach acid, and she did okay with all of that. Her digestion improved a lot with the betaine HCL.

She did take DGL licorice to help protect her stomach lining http://www.swansonvitamins.com/q?kw=dgl+licorice). Also, colostrum is supposed to be very good for helping prevent damage from NSAIDs and to help heal leaky gut. Here are a couple of links:
http://www.ncbi.nlm.nih.gov/pubmed/10205201
http://www.icnr.org/articles/lgs.html

I understand your concern about betaine HCL. You do seem to be between a rock and a hard place. You might talk to your doctor about it. Again, my sister did okay, but I know that's just anecdotal. I would try the baking soda burp test to check your stomach acid, and also find out why you are taking baking soda between meals. I would also look into colostrum - it might be very helpful for you.

Good luck -

 

[shannah]

I just looked up betaine HCL and it said that one should be careful with it while taking any anti-inflammatories, which I am taking.

between the antibiotics and, anti inflammatories, I am not sure how my gut can even improve! I am unable to tolerate probiotics.

xoxo

After being on antibiotics myself a number of years ago for Lyme for 2 1/2 years, I failed to make any permanent gains. There seems to be a growing club of us. Gotta be more to it than what they think.

My digestion is really bad. I was on the Betaine HCL for years with just a little benefit.

Switched to Apple Cider Vinegar with the Mother, (a couple of Tbsp diluted in a little water before meals). It seems to be just as effective at aiding digestion and has the added benefit of alkalinizing the body. Also cheaper.

 

[Daffodil]

hi all. thanks again for the suggestions. i am taking the baking soda because my doctor told me to..i think it is to try and alkalinize...maybe i am high in acid? i dont know.

not sure what to say or do at this point. still feel like i have an undetected virus that is slowly killing me but that theory isnt getting me anwhere lol

 

[maryb]

@Daffodil
I have Lyme but also just showed recently active levels of CMV,EBV and HSV - how on earth can the body keep fighting all this stuff. Have you discussed GcMaf with KdM, are you on immune modulators/ or the like? why not have a break from the abx, you'll know in a short time whether you benefit, a yahoo forum I am on Eurolyme has a couple of member who alternate 3 different abx/ 2 weeks each and then a 2 week break, they do this when the symptoms re-appear, other than those times they are symptom free. I think you need a phone consult with KdM see what he says about things in general.

 

[Daffodil]

@Daffodil
I have Lyme but also just showed recently active levels of CMV,EBV and HSV - how on earth can the body keep fighting all this stuff. Have you discussed GcMaf with KdM, are you on immune modulators/ or the like? why not have a break from the abx, you'll know in a short time whether you benefit, a yahoo forum I am on Eurolyme has a couple of member who alternate 3 different abx/ 2 weeks each and then a 2 week break, they do this when the symptoms re-appear, other than those times they are symptom free. I think you need a phone consult with KdM see what he says about things in general.

hi maryb. i took gmaf long ago and it helped then i plateaued. i was on a small amount. i was supposed to start again but have only taken 1 shot so far. with my fog so bad i just am crying from trying to keep track of everything i have to take..all the supplements, injections, empty stomach supplements etc etc....and then the more sick i get, the more depressed i get, and the more i dont care.

kdm had to cancel my april appt so now i cannot talk to him until mid-june.

i really wish i could talk to my old doctor too...he was a good leaky gut / lyme specialist ...but i would need a few thousand for that and i cannot spare it.

its pretty discouraging to know that all my efforts with diet and supplements over the last 2 yrs have been for nothing...the leaky gut is exactly as it was before!

 

[maryb]

Discouraging is an understatement for what is happening (or not happening) - gosh I really feel for you daff.

could you possible see an ND who may be able to help you, they say heal the gut and heal the person. The MAPS test is supposed to be a good one to help practitioners pinpoint stuff.

I don't do well with l-glutamine,

digestive enzymes? do you take those?

just thinking off the top of my head... I'm not too good but not on anything at present so I can't grumble.

I'm gluten.sugar.soy,legume,dairy free which I'm sure helps, but who knows
so hope you can find something soon to help you improve.

 

[soxfan]

I have been treating Lyme/Bartonella off and on for 9 years now. At one point I was 95 percent well and resumed a normal life only to slip backwards within 8 months. I have also been on IV abx and many many combos of orals.

I really don't have other symptoms besides the neuro and the nerve pain in my feet and legs. I never feel totally right in my head...sometimes I can't tolerate any kind of mental stimulation...as it makes my brain hurt and then I get very tired.

I am not sure I will ever be rid of these symptoms like I was back in 2007-2008 but I keep trying. I have only been on my most recent combo for a month. Sometimes the doctor will let me go 3 months and If I don't have much improvement will change it up.

The only improvement I have had this round is the Bartonella rash is now reappearing like it was but I don't feel much relief from the other symptoms...fatigue is a constant.

I wish I could help you more but I am fighting too and just wanted to let you know....it is truly very discouraging at times. Luckily I don't have any stomach issues even being on all this junk for the past 9 years....

 

[AndyPandy]

@Daffodil sorry you are not doing well. Hope you find some answers soon. Best wishes Andy.

 

[Charles555nc]

thanks, mary

i have been taking L Glutamine for a while now. i have finished one 454 g bottle so far. I take 1 tsp a day.

i was told to take baking soda in water between meals. i am trying but between all the sleeping and the other supplements, i am lucky to do it once a day. also, i am worried about my kidneys which sometimes show a little low filtration rate and i read baking soda can cause problems with that....but maybe you need huge amounts to cause an issue.

i have never heard of betaine HCL before...i am going to look it up now.

Thanks a lot
daff

1200mg NAC with 6 grams sodium ascorbate and 3000mg niacinamide (twice a day for one week) then 500mg niacinamide a day afterwards, did more for my gut/cholesterol levels/hormones then most other stuff, including hormones themselves and glutamine/antibiotics/probiotics on the gut. Also make sure you are taking enough zinc/molybdenum/vitamin D.

Just being deficient in one of those, can have devastating effects on the immune system. And a herx may not be unexpected, after a deficiency is corrected.

Sadly, antibiotics can stop working over the years and actually just be killing the good bacteria after the bad bacteria become resistant. This was my experience with clindamyacin. Worked for two years then became worthless.

 

[Daffodil]

@maryb...thanks for trying to help Im sorry you arent well either. I have decided to try harder with this diet and just do better. Maybe if I can do that, I can start probiotics and it wont cause me diarrhea. Something has to help.

How can you give all that up and still find things to eat? Do you know if its helped the leaky gut? Have you done any testing?

I told KDM that I had 10 great days of 60% less brainfog...that really happened, and it happened not too long ago...so maybe this is all part of the process..?

@soxfan...wow 9 yrs! oh man. well at least you dont have the fatigue part anymore. when you were 95 % well and went back to normal life, did you remain on any maintenance treatments? are you on any special elimination diets? the brain must go! ugh. has your doctor suggested more IV antibiotics for the neuro?

@AndyPandy....thank you

@Charles555nc....i am really glad those supplements help!

I feel like if only I could get over this big hump, i could start on Samento and somehow be able to tolerate it.

Maybe I will get some clues when I speak to my doc in June.

xoxo

 

[Charles555nc]

@Daffodil I couldnt tolerate the NAC until I took it with many grams of vitamin C. Certain supplements seem to unlock the ability of other supplements. I got the idea to try niacinamide when i read a story about a prison of war survivor who was disabled and got his life back after taking large doses of niacinamide.

Btw the I take the NAC 1200 and the 5-6 grams of vitamin C twice a day.

 

[Sushi]

I feel like if only I could get over this big hump, i could start on Samento and somehow be able to tolerate it.

For many of us the secret is starting really low. 1/8 drop for me. I tried 1/2 drop first and it put me in bed for days. This way I have been able to work up to 7 drops so far, but it is slow.

Sushi