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Posted 10/10/2018 3:22 PM (GMT 0)
Hey everyone it’s veen a while since I’ve last posted but I’ve not been doing to great lately. Basically I went 2 years undiagnosed & I was on antibiotics for bart, & Lyme for 7 months without any real progress. I really didn’t even notice anything different while on the antibiotics although the first few days I stopped them I did feel great.

I had redone my bloodwork and my cd57 went from a 46 to now a 21, which I don’t understand.

I still have the same reactive band which band 23 igg.

I also tested positive for a bad gene for fighting Lyme & mild (not sure what the gene was)

I almost feel like I have no hope of getting better. I have decided I’m gonna change doctors because I don’t feel confident in my current doctor. I want a doctor that will lay out a game plan with me and have a goal to get me better. I felt like my current doctor was just throwing medicine at me.

I am dealing with really bad depression and really bad suicidal thoughts, especially over the last 3 days. I just can’t see that there will ever be a light at the end of the tunnel. Every time I start looking into my illness I begin searching things on the web then finding all these other possible things that could be wrong with me, like mold for example. The thought of having to get a new place and basically getting rid of all my stuff seems so much. I love a challenge and I am very confident in myself but I just feel like there’s no point in fighting something that seems to never end.

I am just so tired of feeling so exhausted every single day.
Posted 10/10/2018 3:42 PM (GMT 0)
So sorry you’re feeling this way. Have you tried any of the natural protocols? I hear good things about them.
Posted 10/10/2018 3:46 PM (GMT 0)
I'm sorry these days are so dark. I'm right there with you.

The depression and those thoughts are the illness talking to you. It looks like you're not getting anywhere, but that's not true -- you've learned some things that haven't worked, which will help you narrow down a new approach, and you have also learned what you want in a doctor. Switching to a new doctor is a great idea. Did you find one already? A good doctor can help you look into the possibility of mold too.

One step at a time will get us through this.
Posted 10/10/2018 4:23 PM (GMT 0)
Hearts in pain I have not yet tried anything natural but that will probably be something I try next.

Dahlias, I’m sorry to hear you’re going through the same.. I wouldn’t wish this on anybody. Thanks for the positive insight! & I believe I have found the one I want. I just wish there was a way to find out more about these doctors before having to pay so much out of pocket. But from what I’ve heard this doctor is pretty good. What do you think about the fact that after stopping the antibiotics I felt really good for a few days? Would you say that maybe I’ve been herxing the whole time on the meds but just didn’t realize it?

Also something else I want to mention, towards the end of my medication I was really really doubting my diagnosis so I doubled the dose of tindazole just to see what kind of reaction I would have. After about a hour I found myself in bed crying historicaly. Would you say that’s eye opening? I have a very hard time catching on to the signs with this disease and connecting the dots
Posted 10/10/2018 4:40 PM (GMT 0)
(sorry I posted this in the wrong place 3 times lol, here, finally the right spot!)

yeah I hear you
I was 2 years without treatment, and I am about 1 year and 1 month into antibiotics. I didn't really make any progress until 8-9 months in. I think switching doctors would help. The realizations I went through are: herbs are sometimes stronger (but slower) then antibiotics which surprised me, combining herb+abx is also good, switching back and forth between antibiotics is good, and I never really made progress until I took Ivermectin/Alinia but that could just be my case (as in all of this). My goals were to get a backstop, then establish a baseline, and then increment the baseline. At 7 months like you, I had no real noticeable progress. You could be just around the corner, perhaps need a stronger antibiotic and then switch back when that works, maybe combined some herbs, etc. Getting rid of mold and detoxing heavy metals and poisons was key to getting to where I am.

But here I am today 1 year and about month into treatment and I have some slight itchiness at night but that's it. I'm jumping out of bed and doing things I haven't been able to do for years. I am fully expecting my symptoms to come back (probably in 3-6 weeks because I just switched from penicillin to doxy), but I am living my good days as much as I can as I have them.

there are many people who get this disease that will never know it is lyme, or if they suspect it, their doctor will fraudulently persuade them that they don't have it to maximize their illness-profit potential. I consider myself blessed that I am one of the few that was able to figure out what disease I had even though all my tests came back negative. The fraudlent doctors wouldn't even do my CD-57 test. That was near the end when I fired them and went with a LLND because LLMD are banned in my state.

So out of everyone that gets this disease, only a few figure out what it is. Of them, most of them are in states that ban treatment. Of the ones that can get treatment, it can take a year or two to establish a baseline (my opinion), you're 7 months in -- I think you're almost around the corner. If not soon, maybe in 4 months. So you're almost there. Talk to your new doctor about things you learned here and the first paragraph above if I can help with any ideas, questions, etc let me know. Take care
Posted 10/10/2018 4:49 PM (GMT 0)
What are you treating with?

It's important to find a doctor you trust. I would express your concern with your current doctor. If you still can't find common ground and trust it would be smart to move on.

Remember that not everyone responds the same. Seven months is a decent amount of time but some people don't start to feel better for even longer than that.

Make sure you are not confusing not getting better with herxing. Sometimes it can be hard to tell the difference when feeling bad. Make sure you are on top of your detox game.

That said, in my experience, even if you are on top of your detox game it might not be enough. What helped me was to start pulsing. Taking the antibiotics and other anti-microbials everyday was to much on my system. I never had a chance to flush he endotoxins out of my system. This left me miserable day in and day out. Pulsing helped my body flush the crap out before I went back to killing.

Hope things improve for you!
Posted 10/10/2018 5:19 PM (GMT 0)
Just going after the critter load is sometimes not enough to feel better, not to mention a very slow process.

1)Sleep is very important, there are many supplements mentioned on the form to help with that.

2)Anxiety and or dep- again, treat separately, many natural sups/herbs for this. while your waitig for the critter load to lower.

3) everyone one with lyme needs their thyroid levels checked properly, ft3, ft4, not just tsh.
Posted 10/10/2018 7:56 PM (GMT 0)

Redwhite&blue said...
Hey everyone it’s veen a while since I’ve last posted but I’ve not been doing to great lately. Basically I went 2 years undiagnosed & I was on antibiotics for bart, & Lyme for 7 months without any real progress. I really didn’t even notice anything different while on the antibiotics although the first few days I stopped them I did feel great.

I had redone my bloodwork and my cd57 went from a 46 to now a 21, which I don’t understand.

I still have the same reactive band which band 23 igg.

I also tested positive for a bad gene for fighting Lyme & mild (not sure what the gene was)

I almost feel like I have no hope of getting better. I have decided I’m gonna change doctors because I don’t feel confident in my current doctor. I want a doctor that will lay out a game plan with me and have a goal to get me better. I felt like my current doctor was just throwing medicine at me.

I am dealing with really bad depression and really bad suicidal thoughts, especially over the last 3 days. I just can’t see that there will ever be a light at the end of the tunnel. Every time I start looking into my illness I begin searching things on the web then finding all these other possible things that could be wrong with me, like mold for example. The thought of having to get a new place and basically getting rid of all my stuff seems so much. I love a challenge and I am very confident in myself but I just feel like there’s no point in fighting something that seems to never end.

I am just so tired of feeling so exhausted every single day.

Testing positive with band 23 doesn't mean anything. Your body can still produce the antibodies - even after you're symptom free.

It's possible that you need to treat Babesia...and then go back to lyme and bart.

...or it's possible that bart treatment wasn't long enough...it can take many months...

Keep fighting....it will be worth it.

Make a list of your symptoms...and take a look at it every month or two....don't expect much to happen in a few weeks.

I still feel quite crappy on half my days...because my worst symptom is still with me.
But, when I look at my symptom list...and I see I have 'lost' many...that gives me hope.
My worst one..is also my first symptom...so it's been with me the longest. Maybe it's just dug in more.

Keep up the fight....come here for support...we 'get' it....
Posted 10/10/2018 10:08 PM (GMT 0)
I'm sorry you are going through this. The mold stuff is seriously real and very difficult to overcome. I left the moldy environments and started detoxing in Sep 2016 and started Buhners protocols for Lyme and coinfections in Jun 2017, and I still feel like I've made only a little progress. I have the HLA-DR/DQ genes for susceptibility to borrelia and multi-susceptible.

I still can't get completely away from the mold. It's everywhere where I live. Don't underestimate the impact that even small, random exposures on a regular basis have on your body. Just a little causes chronic inflammation. All the abx or herbs in the world won't negate the inflammatory response that mold, mycotoxins, and mVOCS from water damaged buildings have on susceptible people. Once you become hypersensitive, it takes drastic measures to turn that switch off.
Posted 10/10/2018 10:22 PM (GMT 0)

WalkingbyFaith said...

I still can't get completely away from the mold. It's everywhere where I live. Don't underestimate the impact that even small, random exposures on a regular basis have on your body. Just a little causes chronic inflammation. All the abx or herbs in the world won't negate the inflammatory response that mold, mycotoxins, and mVOCS from water damaged buildings have on susceptible people. Once you become hypersensitive, it takes drastic measures to turn that switch off.

I don't see how anyone gets totally away from mold. It's in the soil, the lawn...etc.
I go for a walk on a trail in the forest...and sometimes smell it.

It can be in the toilet tank....in nooks and crannies of the windows...etc.

I think in small amounts we should be able to handle it...unless we're susceptible.
But, not sure how anyone avoids it altogether.
Posted 10/10/2018 10:32 PM (GMT 0)

Girlie said...

WalkingbyFaith said...

I still can't get completely away from the mold. It's everywhere where I live. Don't underestimate the impact that even small, random exposures on a regular basis have on your body. Just a little causes chronic inflammation. All the abx or herbs in the world won't negate the inflammatory response that mold, mycotoxins, and mVOCS from water damaged buildings have on susceptible people. Once you become hypersensitive, it takes drastic measures to turn that switch off.

I don't see how anyone gets totally away from mold. It's in the soil, the lawn...etc.
I go for a walk on a trail in the forest...and sometimes smell it.

It can be in the toilet tank....in nooks and crannies of the windows...etc.

I think in small amounts we should be able to handle it...unless we're susceptible.
But, not sure how anyone avoids it altogether.

Extreme mold avoiders go camping in pristine outdoor environments where there is little pollution or outdoor mold. They (and educated CIRS folks) also clean fanatically - toilet tanks, window sills, bathtub drains, washing machines, etc. They learn where mold hides and remove it constantly. They alter their living habits and indoor environment to reduce the amount of outdoor mold they bring in and make the indoor environment less conducive to mold growth. They also reduce EMF exposure indoors, which Klinghardt says greatly increases the amount of mycotoxins produced by indoor mold.

Extreme mold avoidance is not for half-hearted people.
Posted 10/10/2018 11:14 PM (GMT 0)
I believe mold may be a problem with me. Like I said I have the susceptible gene to get sick from it.

This all started with me moving into a new apartment. After staying one night I woke up never feeling the same afterwards. It’s this chronic brain fog that has remained with me since.

I would check to see if there was mold in the apartment but they have tore them down. If that tells you anything! Lol

I never noticed any change when moving from the apartment though which I don’t understand.

I understand this is a long process. I just feel like it’s odd I didn’t notice any change at all other then after I stopped the antibiotics for a couple days but then it went back to feeling like hell.
Posted 10/10/2018 11:29 PM (GMT 0)

WalkingbyFaith said...

Girlie said...

WalkingbyFaith said...

I still can't get completely away from the mold. It's everywhere where I live. Don't underestimate the impact that even small, random exposures on a regular basis have on your body. Just a little causes chronic inflammation. All the abx or herbs in the world won't negate the inflammatory response that mold, mycotoxins, and mVOCS from water damaged buildings have on susceptible people. Once you become hypersensitive, it takes drastic measures to turn that switch off.

I don't see how anyone gets totally away from mold. It's in the soil, the lawn...etc.
I go for a walk on a trail in the forest...and sometimes smell it.

It can be in the toilet tank....in nooks and crannies of the windows...etc.

I think in small amounts we should be able to handle it...unless we're susceptible.
But, not sure how anyone avoids it altogether.

Extreme mold avoiders go camping in pristine outdoor environments where there is little pollution or outdoor mold. They (and educated CIRS folks) also clean fanatically - toilet tanks, window sills, bathtub drains, washing machines, etc. They learn where mold hides and remove it constantly. They alter their living habits and indoor environment to reduce the amount of outdoor mold they bring in and make the indoor environment less conducive to mold growth. They also reduce EMF exposure indoors, which Klinghardt says greatly increases the amount of mycotoxins produced by indoor mold.

Extreme mold avoidance is not for half-hearted people.

Yup. it's everywhere. we had an issue with our washing machine. My husband had to take it apart (the spindle...etc) and it was gross what was in there. I'm sure some of it would be mold spores.

Spill a cup of coffee on the carpet...or even the hardwood/laminate floor...I'm sure a bit goes through - and can't be cleaned unless you pull up the floor.

For EMF - you turn off the breaker every night? Or just the Wifi?
What about the smart meter...do you get rid of that? I'm not sure if we can now that we have one.

At least our attic is bone dry...no mold there...and the windows...- well - what I can see looks good.
Posted 10/10/2018 11:55 PM (GMT 0)
Mold is really strange. I think it all depends if you happen to be sensitive the type that you are being exposed to or something. There is one building in particular that seems to bother me, and the strange thing is that I was fine for a year or two, and then it started to bother me, and now it takes a week or more to feel back to normal after I go there.

I don't know if 7 months on antibiotics without improvement might mean that you need to try something different. I've had a lot better luck with herbs, personally, but I think some treatments do take a year or two to work.

It's good that you are going to a new doctor. You definitely should investigate the fact that your cd57 is going down and not up. I really don't know too much about tests though. The cd57 test was too expensive for me, so I only got it done maybe once.
Posted 10/11/2018 12:00 AM (GMT 0)
Girlie,

I don't really know much about reducing EMF. I'm sure the serious avoiders make sure they don't set up camp or buy a home near a tower or hot spot area. They probably don't have WIFI in their house. They probably travel nearby to use WIFI when they need it, or use wired internet connection. If you have WIFI, you can turn the router off when you're not on the computer. Unfortunately, I'm living with a relative whose whole house is wireless with one of those alarm systems. The computer router stays on 24/7.
Posted 10/11/2018 12:19 AM (GMT 0)

Redwhite&blue said...
I believe mold may be a problem with me. Like I said I have the susceptible gene to get sick from it.

This all started with me moving into a new apartment. After staying one night I woke up never feeling the same afterwards. It’s this chronic brain fog that has remained with me since.

I would check to see if there was mold in the apartment but they have tore them down. If that tells you anything! Lol

I never noticed any change when moving from the apartment though which I don’t understand.

This sounds like classic CIRS from water damaged buildings. If you have a susceptible gene, moving away from the exposure doesn't fix the problem because the toxins you were exposed to continue to be recirculated in your body in a perpetual cycle that causes ongoing symptoms due to inflammation. Shoemaker has a protocol for recovery. The first step, of course, is removal from exposure. That includes possesions that were in the contaminated environment. The second most important part is the use of binders - Cholestyramine or Welchol - to get the toxins out of your body.

I encourage you to learn more about CIRS and Shoemaker's protocol. You can google them. Also read up on mold avoidance. There's a huge learning curve with this.

If you have the option of camping in a clean tent or camper, try it for about 2 weeks. Don't take anything with you that was in that apartment. Better yet, shower in an alternate place, buy some new clothes and personal items and get a ride in someone else's clean car to the clean location where you will stay. See how you feel while you are away. If you feel better, then mold and/or contaminated possesions are likely affecting you. Try to re-expose yourself to your possesions first away from your residence. See how your possesions affect you. Then go back to your residence. Make careful observations and notes at each step of the process.

Camping is easy for some and seemingly unthinkable for others (like me). If camping seems too out there for you, think of another safe place you could go for a couple of weeks to do this - a hotel, someone else's home, etc. Just make very sure that wherever you stay isn't moldy, water damaged, or otherwise toxic.
Posted 10/11/2018 12:47 AM (GMT 0)

Redwhite&blue said...
What do you think about the fact that after stopping the antibiotics I felt really good for a few days? Would you say that maybe I’ve been herxing the whole time on the meds but just didn’t realize it?

Also something else I want to mention, towards the end of my medication I was really really doubting my diagnosis so I doubled the dose of tindazole just to see what kind of reaction I would have. After about a hour I found myself in bed crying historicaly. Would you say that’s eye opening? I have a very hard time catching on to the signs with this disease and connecting the dots

If you are mold toxic, as I suspect, that may be why you didn't notice anything until after you stopped abx for a few days. Abx kills bacteria, which releases toxins in the body. Toxins of all kinds (mold, bacteria, yeast, heavy metals, VOCs, etc) can cause very similar symptoms, particularly if they are neurotoxins that affect the nervous system. You may have felt better after stopping the abx, because your body was getting a break from some of the toxins.

I think the hysterical crying after the double dose of meds does indicate something. It seems it was working and was killing pathogens, causing you to herx.

Do all you can to reduce your total toxic load - eat clean food, drink clean water, don't use anything in your house, car, or on your body that has fragrance, avoid mold, turn off WIFI routers when not using the computer, etc.

Detox every day - epsom salt baths and sauna can be especially helpful for very toxic people.

Binders - take some every day 2 hours apart from meds/supplements/food. Lots to choose from - activated charcoal, modified citrus pectin, bentonite clay, chlorella (only if you don't have amalgam fillings or mercury toxicity), Cholestyramine or Welchol (Rx).

Your last statement above sounds like me. When you have mold in the equation, and you have multiple infections, and, in my case a mouth full of amalgam fillings, there really is a seemingly infinite list of possibilities of what could be causing symptoms. As you detox more and reduce the pathogen load, with time and practice, it gets easier to troubleshoot and identify triggers. It's not impossible. It gets easier as time goes on. It's a long, slow process, but recovery is ALWAYS possible and many have gotten there.
Posted 10/11/2018 2:17 AM (GMT 0)
Walkingbyfaith so what should I mention next to my doctor? Do I have everything i nee for I a diagnosis? I also have elevated C4a, Low msh, low vegf, & high DHEA, Sulfate.

Also have high T3 free but just barley.

Does this sound like for sure mold issue? I also have frequent urination! Years ago before the Lyme diagnosis I had my urine tested and there was some blood in it apparently. None noticeable to the visible eye but the test picked it up.
Posted 10/11/2018 12:52 PM (GMT 0)

Redwhite&blue said...
Walkingbyfaith so what should I mention next to my doctor? Do I have everything i nee for I a diagnosis? I also have elevated C4a, Low msh, low vegf, & high DHEA, Sulfate.

Also have high T3 free but just barley.

Does this sound like for sure mold issue? I also have frequent urination! Years ago before the Lyme diagnosis I had my urine tested and there was some blood in it apparently. None noticeable to the visible eye but the test picked it up.

Yes - mold. High C4a, low MSH, low VEGF, frequent urination are all related to CIRS from mold/water damaged buildings.

Here's the explanation of the CIRS labs.
/www.survivingmold.com/diagnosis/lab-tests

If there is a Shoemaker certified doctor near you, you may want to see them next. IMO, CIRS/mold toxicity should be dealt with before trying to tackle Lyme/co.
Posted 10/12/2018 12:30 AM (GMT 0)
Don’t put too much stock in the CD57 test. Mine fluctuate from 37-70 and I’m feeling pretty good these days, usually. My LLMD says not to worry about it if they’re low, there’s a lot we don’t understand about the connection between the illness and the test, and he’s seen plenty of people feeling great with low CD57 numbers.
Posted 10/12/2018 12:43 AM (GMT 0)

Noah2112 said...
Don’t put too much stock in the CD57 test. Mine fluctuate from 37-70 and I’m feeling pretty good these days, usually. My LLMD says not to worry about it if they’re low, there’s a lot we don’t understand about the connection between the illness and the test, and he’s seen plenty of people feeling great with low CD57 numbers.

Many llmd’s dont test the cd57 because it’s not reliable
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