Desperately looking for answers. Any help would be appreciated.

I’ve been trying to treat Lyme/ Co infections for 7 years now and have only continued to feel worse during this time so I’m starting to wonder if Lyme/ co infections are actually the culprit of my symptoms.

My symptoms consist of

1) severe cognitive dysfunction and mental fatigue,

2) 24/7 head pressure that feels like someone is squeezing my brain,

3) mood fluctuation. Feel like I’ve totally lost my personality as well

3) some fatigue ( not too bad though)

4) sensitivity to anything I do or try ( supps/meds/exercises etc.

5) And I look very thin and sick. Weight loss for sure.

That’s about it. My brain constantly feels like it’s on 1% energy. I wake up feeling worse and never get better throughout the day. I haven’t found a single thing in 7 years to help. And I’ve tried so many different supps/meds/ IVs/ exercise etc. even though I can’t stay on many for long periods of time. They seem to just to irritate my brain.

Some triggers for my symptoms.

1) Anytime I try to exert myself mentally my brain starts to like “ hurt” and feels like it’s on fire and my mood changes with it. It drains my brain of any energy it has any I have to go sit in a dark room.

For example if I play a game of chess or read my iPad for a bit. Also when I watch TV or drive a car my brain energy/mood etc can completely change. My mood and brain energy fluctuates all day as well. It’s a rollercoaster.

2) Severely intolerant to exercise as well. Now if I even try and mow the lawn I get bad thoughts and like my brain starts to shut down.

3) It’s also impossible to interact with people now. That used to be very easy for my but now I go downstairs to eat dinner with my parents for 15 mins and that’s my only social interaction for the day.

I can last about 15 mins max in a conversation then I have to go be by myself in my room. Brain gets too tired and uncomfortable.

I’ve gone from playing hockey, studying hanging out with friends every day to sitting in my room for about 5 years straight because anything I try and do irritates my brain.

I have NO vertigo, blurry vision, tremors, balance issues, dizziness, naseau, fevers, numbness, body aches or pains, memory loss, or anything of that sort to help point me in the right direction. That’s why I sometimes question the Lyme diagnosis.

I had a positive PCR through Igenex in 2012 but all my inflammatory (C4a, C3a, TGb1 etc) come back normal now, VCS is normal. Just did mold test via Neil Nathan provocation and I have no mold. My heavy metals test came back fine. My CD57 has been a bit low for awhile (60 or so) but came back 120 last time.

Any help would be greatly appreciated. At my wits end just sitting in my room all day not being able to do anything and no idea what direction to go in.

Thanks in advance

Post Edited (Brab8878) : 7/11/2019 9:25:18 PM (GMT-6)

also have you had your iron levels checked and been screened for anemia?

and have you had a full and complete hormone screening?

I think it’s always good to look at other things like heavy metals, mold, parasites, and yeast etc... especially if you’ve been thoroughly treated for your infections. You never know what might make the difference and everyone is different and can respond differently to treatment. Some that don’t do well with antibiotics find more relief with herbs or bvt. Others may do very well with antibiotics. The question is... how were you treated for your infections? Was bartonella and babesia treated properly? Did you do biofilm treatment and cyst busting for the Lyme? I personally don’t believe any one dr is perfect so it’s possible something was missed.

Post Edited (Upatnite) : 7/11/2019 9:49:43 PM (GMT-6)

Upatnite said...
I think it’s always good to look at other things like heavy metals, mold, parasites etc... especially if you’ve been thoroughly treated for your infections. You never know what might make the difference and everyone is different and can respond differently to treatment. Some that don’t do well with antibiotics fins more relief with herbs or bvt. Others may do very well with antibiotics. The question is... how were you treated for your infections? Was bartonella and babesia treated properly? Did you do biofilm treatment and cyst busting for the Lyme? I personally don’t believe any one dr is perfect so it’s possible something was missed.

Agreed. I’m just curious if I’m completely down the wrong path.

Mold, heavy metal tests came back fine.

I’m very sensitive to meds/supps and treatment so have a tough time staying on it but just some of the things I’ve tried.

Oral antibiotics for Lyme and Bart
Zhang protocol
HBOT
Buhner herbs
Some of Cowden protocol,
Ozone
IV C
Glutathione,
Basically every supportive supplement known to man
Saunas,
PK Protocol
Candida treatment
Hansa center treatment

Missing a bunch of others as well.

No help for cognitive symptoms from anything.

And I don’t even think I know what a herx is cause most things just irritate my brain so it’s tough to tell if it’s herx or just the irritations.

I have gotten some severe fatigue from some treatments for a week or so like Carvacrol, Stevia, ozone etc. but after a week it goes away and I don’t feel any better.

Brab8878 said...
I’ve been trying to treat Lyme/ Co infections for 7 years now and have only continued to feel worse during this time so I’m starting to wonder if Lyme/ co infections are actually the culprit of my symptoms.

My symptoms consist of

1) severe cognitive dysfunction and mental fatigue,

2) 24/7 head pressure that feels like someone is squeezing my brain,

3) mood fluctuation. Feel like I’ve totally lost my personality as well

3) some fatigue ( not too bad though)

4) sensitivity to anything I do or try ( supps/meds/exercises etc.

5) And I look very thin and sick. Weight loss for sure.

That’s about it. My brain constantly feels like it’s on 1% energy. I wake up feeling worse and never get better throughout the day. I haven’t found a single thing in 7 years to help. And I’ve tried so many different supps/meds/ IVs/ exercise etc. even though I can’t stay on many for long periods of time. They seem to just to irritate my brain.

Some triggers for my symptoms.

1) Anytime I try to exert myself mentally my brain starts to like “ hurt” and feels like it’s on fire and my mood changes with it. It drains my brain of any energy it has any I have to go sit in a dark room.

For example if I play a game of chess or read my iPad for a bit. Also when I watch TV or drive a car my brain energy/mood etc can completely change. My mood and brain energy fluctuates all day as well. It’s a rollercoaster.

2) Severely intolerant to exercise as well. Now if I even try and mow the lawn I get bad thoughts and like my brain starts to shut down.

3) It’s also impossible to interact with people now. That used to be very easy for my but now I go downstairs to eat dinner with my parents for 15 mins and that’s my only social interaction for the day.

I can last about 15 mins max in a conversation then I have to go be by myself in my room. Brain gets too tired and uncomfortable.

I’ve gone from playing hockey, studying hanging out with friends every day to sitting in my room for about 5 years straight because anything I try and do irritates my brain.

I have NO vertigo, blurry vision, tremors, balance issues, dizziness, naseau, fevers, numbness, body aches or pains, memory loss, or anything of that sort to help point me in the right direction. That’s why I sometimes question the Lyme diagnosis.

I had a positive PCR through Igenex in 2012 but all my inflammatory (C4a, C3a, TGb1 etc) come back normal now, VCS is normal. Just did mold test via Neil Nathan provocation and I have no mold. My heavy metals test came back fine. My CD57 has been a bit low for awhile (60 or so) but came back 120 last time.

Any help would be greatly appreciated. At my wits end just sitting in my room all day not being able to do anything and no idea what direction to go in.

Thanks in advance

Your symptoms very similar to my older son who was diagnosed with Mycoplasma pneumonia. he suffered straight six months of brain fog, cant focus on any brain work, back head pressure. He got back somewhat normal after 10 days of azithromycin and then later FWGE and finally EO. he was so skinny and zero desire of eating anything during the entire episode. For Essential oil see below.
https://www.healingwell.com/community/default.aspx?f=30&m=4137876

lookahead22 said...

Brab8878 said...
I’ve been trying to treat Lyme/ Co infections for 7 years now and have only continued to feel worse during this time so I’m starting to wonder if Lyme/ co infections are actually the culprit of my symptoms.

My symptoms consist of

1) severe cognitive dysfunction and mental fatigue,

2) 24/7 head pressure that feels like someone is squeezing my brain,

3) mood fluctuation. Feel like I’ve totally lost my personality as well

3) some fatigue ( not too bad though)

4) sensitivity to anything I do or try ( supps/meds/exercises etc.

5) And I look very thin and sick. Weight loss for sure.

That’s about it. My brain constantly feels like it’s on 1% energy. I wake up feeling worse and never get better throughout the day. I haven’t found a single thing in 7 years to help. And I’ve tried so many different supps/meds/ IVs/ exercise etc. even though I can’t stay on many for long periods of time. They seem to just to irritate my brain.

Some triggers for my symptoms.

1) Anytime I try to exert myself mentally my brain starts to like “ hurt” and feels like it’s on fire and my mood changes with it. It drains my brain of any energy it has any I have to go sit in a dark room.

For example if I play a game of chess or read my iPad for a bit. Also when I watch TV or drive a car my brain energy/mood etc can completely change. My mood and brain energy fluctuates all day as well. It’s a rollercoaster.

2) Severely intolerant to exercise as well. Now if I even try and mow the lawn I get bad thoughts and like my brain starts to shut down.

3) It’s also impossible to interact with people now. That used to be very easy for my but now I go downstairs to eat dinner with my parents for 15 mins and that’s my only social interaction for the day.

I can last about 15 mins max in a conversation then I have to go be by myself in my room. Brain gets too tired and uncomfortable.

I’ve gone from playing hockey, studying hanging out with friends every day to sitting in my room for about 5 years straight because anything I try and do irritates my brain.

I have NO vertigo, blurry vision, tremors, balance issues, dizziness, naseau, fevers, numbness, body aches or pains, memory loss, or anything of that sort to help point me in the right direction. That’s why I sometimes question the Lyme diagnosis.

I had a positive PCR through Igenex in 2012 but all my inflammatory (C4a, C3a, TGb1 etc) come back normal now, VCS is normal. Just did mold test via Neil Nathan provocation and I have no mold. My heavy metals test came back fine. My CD57 has been a bit low for awhile (60 or so) but came back 120 last time.

Any help would be greatly appreciated. At my wits end just sitting in my room all day not being able to do anything and no idea what direction to go in.

Thanks in advance

Your symptoms very similar to my older son who was diagnosed with Mycoplasma pneumonia. he suffered straight six months of brain fog, cant focus on any brain work, back head pressure. He got back somewhat normal after 10 days of azithromycin and then later FWGE and finally EO. he was so skinny and zero desire of eating anything during the entire episode. For Essential oil see below.
https://www.healingwell.com/community/default.aspx?f=30&m=4137876

Thank you so much. I will look into this further. This has never been mentioned to me. I appreciate it.

Brab8878 said...

Lapis_29 said...
were your doctors data test results interpreted properly? I would join the Andy Cutler facebook group and post your results and they will interpret them properly. Low mercury does not always mean low mercury depending on what other metals are high.

when you say you did mercury detox, what did that entail specifically?

Just looked it up.

It was Doctors Data urine test with IV provocation

Mercury was the only one that came up abnormal at 9.5 ug/g but my doctor said that numbers normal.

---------------------



A provocation test will tell you NOTHING about brain mercury, nothing at all. You need to get the HAIR test from Doctors Data. Ask the Cutler people about the test you need, get that test, then post those results to the Cutler FB group and they will help you analyze them.

Understand I'm not saying mercury is your issue, but it is something you should eliminate as a possibility.

Post Edited (Lapis_29) : 7/11/2019 10:22:12 PM (GMT-6)

Posted this late last night. Wanted to see if anyone in the day time crowd recognized these symptoms/ had any ideas how to improve.

Thanks in advance for any help.

lymegirly said...

Brab8878 said...
I’ve been trying to treat Lyme/ Co infections for 7 years now and have only continued to feel worse during this time so I’m starting to wonder if Lyme/ co infections are actually the culprit of my symptoms.
...
Any help would be greatly appreciated. At my wits end just sitting in my room all day not being able to do anything and no idea what direction to go in.

Thanks in advance

Hello,
my heart goes out to you and I want you to know you are not alone.
A family member of mine could be your twin. The only thing he has you did not mention is extreme sensitivity to light. otherwise exactly the same!!! honestly he could have wrote this!
he found out he had radioactive poisoning from uranium, thorium and mostly radon. Don’t lose me! He was never around radiation and we don’t live relatively close to a plant. It was from his Granite encased well he was drinking out of for 7 years. Yes, he had lyme but the poisoning made it 100x worse and was his biggest problem. He has been able to slowly detox it out of his system.
Do you have any idea if you have been exposed to anything like this?

Interesting. I do not believe I have had exposure to radiation like this but like your family member, maybe I did without knowing.
Any idea how he was able to test for things like this?

saraeli said...
A few ideas:

Bioresonance machine (such as the AmpCoil)
Limbic system retraining (such as DNRS)
Assess for mast cell activation syndrome (symptoms can be just cognitive, e.g. brain fog)
Experiment with diet: low-histamine, low-lectin, sugar-free, gluten-free, anti-inflammatory, etc.

The constant reactions to treatments you ingest as well as the post-exertional malaise make me think you have tons of inflammatory processes happening in an ongoing way, and the fact that it fluctuates makes me wonder if there's something dietary or some other type of exposure (allergen? toxic cleaning or body products?) that is contributing to it.

Inflammation on that scale could be caused by chronic viral activity, chronic infections of other kinds (bacteria, parasites, fungi, etc.), or neurological damage caused by something that's long gone. Programs like DNRS aim to repair that sort of damage. Might be worth looking into.

So sorry you have had such a difficult road!

Thank you so much for taking the time to respond. Greatly appreciated.

I actually started up the DNRS program a few weeks ago because of exactly what you were talking about.

Even with that I couldn’t continue. As I kept doing them I got more and more irritable and angry and my brain fatigued as I did them so I had to stop.

I stopped and started it like 5 times to give it a fair shot but just wasn’t right for me. I’m sure I will try it again at some point.

Im also with you on the mast cell idea. It makes a lot of sense for me on paper. I have tried treatment and unfortunately didn’t have any relief. I also don’t have any of the typical itching, bloating, sweating, flushing etc symptoms. Just feels like it irritates my brain and overwhelms me. Tough to explain and part of the reason I have a tough time with doctors. But I will probably try treatment again at some point.

Have also tried loads of anti inflammatory meds/ supps. Was able to take and stayed on LDN for a few months but no relief in symptoms, am on GF, dairy free diet, tried Curcumin, resveratrol, fish oils etc with no help.

Just feel like I’m missing something

You sound so much like me.

The first couple of weeks with DNRS were really hard for me. I was irritable and depressed and angry, and had trouble connecting with my brain productively. My LLMD met Annie Hopper recently and asked her about this, and she said it's very common, as the nervous system fights back against being rewired. Those effects did dissipate, for me, after about two weeks. I hear you that it's not something you are interested in trying again, but I wanted to let you know that your reaction to it is normal and temporary, in case you ever feel like trying again. I know it's a very common reaction, too, after strokes and TBIs when brains are rewiring - depression and irritability are expected. I have given her feedback that people should be made aware of this possibility!

With MCAS, too, I also didn't have any of the symptoms you mentioned, which is why it took me so long to realize I had it. For me, the primary symptoms of MCAS are strong reactions to treatment and brain fog. I noticed a huge difference when I switched to a low-histamine diet and started taking quercetin.

I hope that you find a restorative path very soon!

Hi and welcome!

So sorry for all you’ve been through. I read this earlier today but didn’t have a chance to respond. I wanted to ask about mold. You mentioned some CIRS labs that were normal and a provocation test for mold from Neil Nathan.

I never heard of a provocation test for mold. Can you tell me about it?

How long ago were the CIRS labs done? If long ago, have you moved, changed jobs, stayed somewhere while traveling that might have had mold since those tests were done?

Have you ever taken Cholestyramine? If so, what was that like?

Have you ever read Dr. Ackerlerly’s article, Brain on Fire? https://www.survivingmold.com/community/mary-ackerley-the-brain-on-fire-the-role-of-toxic-mold-in-triggering-psychiatric-symptoms

Wisdom teeth out? If so, have you checked for cavitations?

There’s a good documentary called Root Cause. Might find it on youtube.

Also, this is a good blogcast:
http://www.betterhealthguy.com/episode51

Also, may want to try some parasite treatment if you haven’t. I tried some herbals and pharma and never had a response. Recently tried albendazole and had some improvement.

Post Edited (k07) : 7/12/2019 4:52:48 PM (GMT-6)