I need advise please! - sorry for the long post.

Hey guys, I haven’t been on here for a while, I just felt like I needed a break from all the researching as it was driving me crazy.

So i have had whatever this is, now for about 2 & 1/2 years. Throughout all of this I have kinda doubted my diagnosis because I don’t have a for sure positive, & I was pretty much diagnosed on symptoms with only thing reactive like band 23 igg, low cd57, & all sorts of hormones and vitamin deficiency.

My symptoms are

Chronic fatigue ( feel just sorta out of it energy wise, kinda has its ups and downs as far as intensity throughout the day, but for the most part my new happy place is on my recliner where I would stay all day if I could. When I want to I can muster up some energy to just act “normal” in front of my family and friends)


Cognitive issues ( now this is by far the one that bothers me the most. I just feel kinda stupid. Like I do stupid crap all day long and just feel extremely embarrassed. I just forget things that I know I normally wouldn’t forget, I have gotten to where I can’t hardly understand basic information. I can’t hardly remember how to get to places I’ve gone to several times.)

Depression/Anxiety ( this one is right below the cognitive issues. I stay depressed day in and day out. No matter what I do I can’t get it to go away, & I’m a person who never had depression ever before. I feel like some things kinda make it better, although it’s always there. Anxiety is the same way. I can’t hardly even get around with my family who I was around all throughout my life due to anxiety. I just want to hide in my apartment pretty much all day. )

Body just feels “old” ( My body just doesn’t feel like a young mans body. I know I should not feel the way I do, in my early 20’s. I notice I am also easier to hurt like muscle strains, & some mild joint pain when doing physical exercise.)

Disconnected ( this one is weird because it’s their but I sometimes don’t know it’s their. I just notice I am not always present and don’t notice some things emotionally like I would have use too. I feel like I have became like dull to my family and friends. I feel like I just don’t show them the love and affection that I would have use too which has caused a lot of problems in my relationship with my girlfriend. Our relationship has kinda taken rough times because of whatever this is. Even before the financial issues; I just feel like I woke up with that one day and turned into autopilot or something)


STRESSED!

Frequent urination.


Dry skin

Cold feet which comes and goes

Very very bad circulation. ( this one really bothers me as I wake up every single night with a dead limb. Even just siting here typing this I can feel my fingers loosing feeling. It kinda scares me and even adds on to my insomnia because I have to keep tossing and turning in the bed. )

Suidical thoughts ( this one is a *****. These pretty much stay with the depression and anxiety. I at have at least 1 or 2 breakdowns a month to the point where I wanna kill my self, but then kinda find something to motivate me to keep me going. It kinda feels like a cycle. )




I know this seems like quite a bit, but at the same time I could add at least another page and a half or symptoms I just don’t rememeber. These are just the ones that have pretty much been chronic.

So, back to my doubting my lyme diagnosis. I took antibiotics for almost a year, learned and tried all kinds of different detox methods, & also tried to eat better which didn’t always work out.

At the end of the day I just can’t tell what my body is trying to do. I have tried to listen so hard!!!! I can’t tell what a herx is or what is going on. Over my course of antibiotics I have really just felt like the same ole crap every day. Every now and then I feel somewhat decent which became like a good day to me even though it was far from it.

Here’s something that caught me by surprise and kinda makes me feel like I do indeed have Lyme.

So once I kinda just stopped everything I was doing, as far as what I was taking, I had 2 or 3 really really good days. Again, not 100%, but way better then my usual. I couldn’t tell if any symptoms disappeared because I feel like I didn’t have long enough to really see what was going on. I just noticed I was more Alive feeling then usual. This eventually just went away, sadly.


Guys I know this is a whole bunch of information, so I wanna thank any of you that hung around to the end. Lol

I just feel so torn, as far as my diagnosis and stuff. I’m honestly gonna leave your responses to leading me to believe what’s wrong with me. Thank you all

Post Edited (Tarheels8) : 8/28/2019 1:49:38 AM (GMT-6)

This group focuses on Lyme as being a root cause. So most of the advice you’ll be given will be to treat a infection with a dabbeling or mold and parasites.

There’s a whole other theory with a much better success rate. That is that Lyme is a opportunistic infection that something else is causing your body’s immune system to fail.

You might want to consider reseaching the Andy Cutler Chelation Protocol. Join the FB group called that. Be sure to going the big group with +60k members.


Gook Luck

Tarheels8 said...
Also, I have another question. Do you think Lyme is contagious? I’ve read it’s possible to transfer it through sex. Reason I ask is because something else I’ve noticed is my girlfriend being depressed. Also maybe a little fatigue that could be coming from the depression.

But, again this could just be the fact she is depressed over the problem I have to connect with another human beings.

I think most LLMD's would say it can be transmitted via sexual contact....

I highly doubt if it's contagious via casual contact...ie hand shake, kiss on the cheek, etc.

Band 23 is specific to lyme.

Mark F said...

There’s a whole other theory with a much better success rate. That is that Lyme is a opportunistic infection that something else is causing your body’s immune system to fail.


Gook Luck

How is the success rate measured?

And if it is a better success rate (ie treating mercury toxicity via Andy Cutler protocol) then how come it's not commonly known...ie I personally don't know anyone who has healed via the Andy Cutler protocol....
i admit I have only talked to a handful of people on it though....

Girlie said...

Mark F said...
]

How is the success rate measured?

And if it is a better success rate (ie treating mercury toxicity via Andy Cutler protocol) then how come it's not commonly known...ie I personally don't know anyone who has healed via the Andy Cutler protocol....
i admit I have only talked to a handful of people on it though....

So I suppose you need to go on the FB site and ask how many people are doing better. Including the moderators. There’s 39 of them. . I’ve read the original post when they joined. Is pretty amazing You’ll get about 100 members on any given day to say the same. Ask how many have Lyme.. and tsk how they are doing.

Why isn’t it known? I suppose because one making any money off the protocol. Andy’s partner is making money on his books but the new one is only $35 . All the supplement he recommends are general stuff. Including his main Chelator ALA.

Full disclosure, it’s not a protocol that’s for everyone. It’s hard and it takes a long time. Also there a group of people that it did not work for. Most, not all mind you, I can read for myself why they are not successful. Toxic people are really hard headed and deviate from the protocol. It’s dangerous enough to where they’ll ban people that continue to not follow the protocol and then start complaining when they get into trouble. ( note this is only after they have tried multiple times to get some pone to stop what they are doing) Or continue to offer advice that contradict the protocol.

Girle I only come over here to try and get you to pop over there. I was really rude to you a while back and even more recently,, for that I am sorry.

I really would just like to see you all get better. And that maybe ,, just maybe,, there’s a chance this will work for you all also.

Hope to see you there one day.

Mark

Aww thanks for the apology - I probably was rude back to you... lol. So we be even

I’m hoping that mercury isn’t a big issue with me... not sure I have the energy to go down a new path at this point...
I do have some mercury amalgams in my teeth though...

New

So yea changing course is tough but I postponed my Lyme treatment and parasites. I still have have month 7 of the Cowden protocol and all the meds needed for the 8 month Parasite protocol. That alone was worth a small fortune. Along with all kinds of abx I was going to rotate. I had every intention of starting back up. I still might. However as each month goes by I’m making consistent progress. I never thought I’d feel this good again.

I’ll leave you all with this thought. We all know something has damaged our immune system. Mercury is a highly toxic poison and one of its most hideous effects is to prevent your body from absorbing minerals. So your body becomes malnourished. Eathing heathy helps but it’s still not enough. You get all kinds of skin disorders, hair falls out, fungus, and yes Mr Lyme and all his friends show up. Maybe they are the first to arrive . And have a perfect unhealthy body to hang out in.

You have to admit you cannot go through this hell without sometimes wondering if you were being poisoned. Well that very well may be the case,.

I come on this site and it’s really hard to read your posts about wondering if your ever get better. Over there every day there’s a celebration. People popping back after a few years to say hi and to tell people to stick it out. It’s not easy. Almost all consuming. But all so well worth it.

Mark F, that’s the first I’ve ever heard of what you’re talking about. How exactly does that work? Is their blood work for this?

Post Edited (Tarheels8) : 8/29/2019 12:59:35 AM (GMT-6)

Mark F, I’m not sure if this fits me. Ive read most people get it from dental fillings, & sea food. Both which I have not had. Idk I feel like Lyme disease is more my problem.

I have had a history of tick bites in the past. Actually had quite a few soon before these symptoms. I just have these doubts all the time because of how my body reacts to treatment. Sometimes it’s like I’m making 0 progress, & it’s so aggravating. I’m spending so much money on this crap, that may, or may not be helping.

But at the same time why else would I have those few days of relief from symptoms after stopping the antibiotics?

Tarheels8 - Read your top post and all the problems. There are so many things you list I can relate to, as can so many others.

Maybe I missed it, but did you detox well while taking the antibiotics? The fact you felt better taking days off made me wonder. I don't claim to have the answers or whether you have Lyme Disease, though band 23 throws a flag. This, unfortunately, is a somewhat educated guessing game. There is no one good answer or way to proceed. There are so many different trains of thought on what needs to be done, I don't think any are wrong, nor are they right. It would just depend on your particular situation, testing and willingness to keep trying. .

Can relate to most all the symptoms you listed - chronic fatigue, depression, anxiety, disconnected (which I relate to part of the depression), cognitive issues (usually worse when migraine hits), frequent urination,body feeling old, dry skin.... I also experience loss of body fat, kidney issues, itchy back, rash, cold feet (and hands).

I've gotten 85% better before, but now struggle to feel better. I've started a new protocol.Again. It's my third or fourth one. It's been suggested to me it is mold, mercury, weak immune system. Lyme, Bartonella, Babesia, EBV. Some of those I've tested positive for. All are ideas worth looking into.

I am not saying anyone else's suggestions are wrong. It is just my simple opinion it takes some of us a lot more to get this figured out than others, so you look into all possibilities you can. As you know, it can get expensive. And your mentioning of suicidal thoughts is another item many can understand. Understandable, but is an alternative that would scar many people and family.

That means continuing to seek answers and alternatives. You mentioned taking a break from researching. Good idea because of what I mentioned above - there are so many different trains of thought it only adds to the stress and depression at times.

You are young, and there is hope that someone is going to find an answer one day. I don't know when that day will come or in what form. Personally, I believe stem cell therapy has great potential to help. Just me. But we have to get up and hope today may be a better day, even when that is the last thought you have.

I did not want to throw out treatment options because of the complexity and differences of each one of our situations. However, I do hope you keep trying to find an answer after your break. If you did not want to get well, instead of ending life, you wouldn't have posted today. The frustration of this sheite overwhelms me. Then I see my kids, who, even at 24, 22 and 20 need me in some form or fashioion. I'm sure you have people that need you.

The truth is there is no "right" answer until you feel better. That is the only time you will know. As mentioned, I've done it before, so I know it can be done. Do your best to trust in that and survive until you find an answer.

Tarheels,

After reading your last post, I remembered you telling about it before. I probably told you before but will say it again. I suspect you are STILL dealing with mold and/or mycotoxins on your possessions. I have CIRS and am still going through very rough times because of it.

The thing about CIRS and mold exposure is you will continue to have symptoms all the time and can’t tell that you’re reacting to mold until you really get clear of it, and this includes contaminated possessions. Mold remediators will “treat” possessions with someone something that kills mold. This doesn’t remove myoctoxins. Non-porous items like glass, metal, and sealed wood can usually be cleaned enough. Paper is the worst. Plastic isn’t much better from my experience. Clothing can be washed in borax, but I still had issues with clothing and replaced everything. I’m now in the same boat again. All the items I replaced have been contaminated in another house.

You really can’t know if you’re being exposed currently or not without doing an ERMI or HERTSMI-2 on home and workplace. The results of those tests should be thoroughly evaluated on more than just the Shoemaker info. He says HERTSMI-2 less than 10 is statistically safe for a patient who successfully completed CIRS treatment. A house with HERTSMI-2 of 10 and office of 8 are what sickened me in the first place.

Sounds like your CIRS treatment was not successful. Did all of your CIRS labs normalize with treatment and remain normal? Sounds like you treated MARCONS. Was MARCONS eradicated? Were you put on VIP?

for long posts and asking for help is fine! We have to help ourselves and no one who is not living this understands it. that is what we are here for. we all understand this particular struggle

Post Edited (flowergarden) : 8/30/2019 2:07:54 PM (GMT-6)

k07 said...
I used to get the dead limb thing every night. I couldn’t figure it out and thought it was poor circulation. I also have a mild degree of numbness during the day. I’m sure your not sleeping great which really makes everything worse. I resonate with a lot of what you said.

I still don’t know exactly everything that causes the night numbness, but for me it’s some type of sensitivity to chemicals and sometimes supplements (happened with LDN & Coptis). It almost completely went away when we got a new non-toxic mattress. Then I was able to clearly identify when something would cause it again - like a new rug, etc. I’d wake up with my entire side I was sleeping on dead numb. Remove the rug, all good!

I’d also look into mold & parasites.

For me, the numbness was initially a strong indicator of mold exposure - especially face and sometimes lower legs would start to get numb and tingly. More recently, it has also involved MCAS responses to food and undetermined environmental exposures (chemicals, mold, ???, food).