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Severe progressing brain symptoms - Lyme Disease?

Abha

Abha
Messages
267
Location
UK
I wonder where you did the babesia testing? I am searching for some reliable testing for co-infections.
I live in Europe.

@jason30 ....If you check out Dr Lambert on youtube and listen to him he may guide you in the right direction re co infection testing.He is based in Dublin and I think he is an assistant Professor in a USA University too.I know he has had experience (in USA)re Lyme disease there too..This is one of the videos where he speaks on co infections...

Dr Lambert LDUK Interview Dec 17


 
Messages
36
Location
Southern California
I am in USA and my MD suggested test. I had bullseye rash a decade ago, so we were more interested in what was hanging around in my body rather than titers. I am not sure DNA Connexions serves Europe - you could email them through their website. Since this is urine test (PCR), there needs to be a deep tissue massage, prior to sample.

A quick google search shows Armin Labs do blood PCR, which may be closest. Might be worth contacting them also. It seems they test for several strains of Babesia which is good.

From reading/listening to podcasts from Dr James Schaller and Dr Richard Horowitz, Babesia is often missed and sadly hard to eradicate. Good luck!

So far, any diet changes or suppliments I've tried have made zero difference to my symptoms. But If I do have Lyme, I'm guessing these could be worthwhile trying once I've had antibiotic treatment and the disease stops progressing?

@Nine lives I did the DNA Connexions test and it all came back negative, even though my doctor and I knew that I had an active borrelia infection. So keep in mind that it's not perfect, and it is possible to skew the results with user error :/

@SeanQHX1 Diet changes are worthwhile as a way to prevent relapse, once you've had aggressive antibiotic treatment and have regained much of your strength. I personally don't think changing your diet will make the difference when you have an active infection, because its like trying to bail out a boat with a colander. But once you've done everything you can with antibiotics, rest, etc. and you want to ensure that you don't relapse as you try to reintegrate work, exercise, school. whatever, then an anti-inflammatory diet can be helpful.
 

Starlight

Senior Member
Messages
152
It might help you to join Tick Talk Ireland. Many of the people on it have or are being treated by Dr. Lambert. You will find a lot of information and people are really helpful.
 

jason30

Senior Member
Messages
513
Location
Europe
@jason30 For two reasons, one special one, and one generel one. Borrelia (which cause Lyme) contain huge amounts of manganese. When I discovered that low manganese helps me I thought to have borrelia, and the low manganese diet would starve them. And maybe I had, but I don´t think that there are anyones left after three years.
Then manganese alters the gene expression of microglia, more specifically, of their production of nitric oxide. Nitric oxide is used also by nerves for the mechanism of learning and alters the different kind of nerves. It seems to me to be a slow change (so far).

Clearly, thanks.
 
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jason30

Senior Member
Messages
513
Location
Europe
@jason30 ....If you check out Dr Lambert on youtube and listen to him he may guide you in the right direction re co infection testing.He is based in Dublin and I think he is an assistant Professor in a USA University too.I know he has had experience (in USA)re Lyme disease there too..This is one of the videos where he speaks on co infections...

Dr Lambert LDUK Interview Dec 17


Great, thanks a lot.
 
Messages
97
Location
Glasgow, Scotland
@the_phscale Definitelly. Yep, if I've got an active infection that's still ongoing, it would explain why no activites, foods, suppliments and even nootropics havent had any affect on my health. But of course, I expect they will once I'd had antibiotic treatment. I will see my other doctor as soon as I can and get tested for Lyme ASAP.
 

percyval577

nucleus caudatus et al
Messages
1,302
Location
Ik waak up
@percyval577 Low manganese is worth a try untill I get a diagnosis. It's interesting you mention this because all the foods I've been taking are heavy in manganese including garlic, ginger, nut muesli, kidney beans, chickpeas, spinnach, wholegrain foods and green tea. I don't eat meat which probably doesn't help either. This might explain why my symptoms are steadily worsening.
Yes, this might be an easy explanation, and a mainpart (I think).
After a long ebv infection I got more and more symptoms, obviously because I often ate beans and other pulse, I also drank a lot of tea.
Then, by accident, I stopped eating beans, And very slowly I improved. Then, again by accident, I replaced tea by coffee and improved, and I was almost normal after two years. And then I changed my diet again, and stopped eating meat, therefore ate beans again, and I relapsed after three month heavily. Five awful years followed.

When I started low manganese food I felt the first time very good, "only" when making mistakes I felt bad ... but dangerous bad, i don´t know how to put in a few words.
Then a long period with only very slow improvement took place, but after two and a half years my pain had mainly gone, what a pretty succes. But thinking was a bit worse, and I could not work anymore. I also got sudden pm, which didn´t appear in that sense before.
Only recently I discovered the other influences, and I guess the sugar (and fat) issue makes the improvment more comfortable and maybe slightly more accelerated! The positive things (here I didn´t mention chromium above) can be thought of to work in the basalganglia and thalamus, the rulers of the brain.
Here I think i´ts their connections that have been/are destroyed by the effect of manganese. It is also thinkable that there establish bad nerve circuits which make the feeling and coordination sad and poor.


PS: I want to point out that for a long period the improvement (with manganese alone) was only to be evaluated in a time frame of three months! And then after two and a half year the pain could be said of to have mainly gone. What a difficult assesment.

PPS: The tick born disease would be a direct impact from their manganese when the divide. The manganese would leach into the blood or tissue and it´s well known that manganese at high levels is poisening. And inside the joints of patients with heavy symptoms there have been found only ridiculous few borrelia.
 
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Wayne

Senior Member
Messages
4,301
Location
Ashland, Oregon
It started off as flu symptoms, accompanied by brain fog which hit me when I came back from a music festival. ...... I've been out of work and on benefits ever since, while managing to still play in bands as my main hobby.

Hi @SeanQHX1,

I recently developed tinnitus in Feb., 2018. I've since learned a lot about it, and in particular, the large amount of overlap between it and CFS. I think it's quite possible that your CFS symptoms could be a result of the acoustic trauma you experienced from that music festival. I also think it's possible your continuing to play in bands could be preventing you from improving your health.

I'm not sure if you'll see this post, but if you have any questions about any of my speculations, please feel free to ask. And BTW, I'm SUPER-sensitive to sound, and I've noticed loud exposures can leave my body and brain devastated for days. -- Wishing you the best as you try to find answers for yourself!
 
Messages
14
Im suffering with the same symptoms as yourself, can particularly relate to your head symptoms. Food seems to make my head symptoms much worse almost immediately after I have eaten they become almost unbearable. Does eating affect your symptoms & may I ask what diets you have tried? Have you seen anybody that's helped you or have there been any improvements since your first post.
 
Messages
97
Location
Glasgow, Scotland
Im suffering with the same symptoms as yourself, can particularly relate to your head symptoms. Food seems to make my head symptoms much worse almost immediately after I have eaten they become almost unbearable. Does eating affect your symptoms & may I ask what diets you have tried? Have you seen anybody that's helped you or have there been any improvements since your first post.

I haven't noticed any difference in my head symptoms regarding any food. I've tried several diet changes since my first post including low manganese and low gluten (thinking it could be a gut problem) but both of these made no difference. I also tried a ketogenic diet for a while, avoiding carbs and taking high C8 MCT oil with a lot of foods/drinks but again, this made zero difference to any of my symptoms. The same goes for any suppliments I've tried. My headaches have been much the same and just come and go at random. However my head pains when lying down have improved since started this thread and am now able to rest the sides of my head on a regular pillow and sometimes the back of my head. But once in a while, it flares up and I get those sharp, stinging, bleeding pains on the top of my head when lying on the same spot for too long which seems to also cause really really loud tinnitus for about an hour or so. I called the emergency services the first time this happened out of panic.

I haven't spoke to anyone who has experienced quite the same head symptoms I've been getting unforntunately and no one has managed to help me get any further to the bottom of it. But I'm glad to hear you've found some way to relieve your head issues somewhat.
 
Messages
14
I never get any relief from my head symptoms Sean-they've been constant and unbearable since September 2014 ( the only time I'm out of my misery is when I'm asleep!) At the same time I'm finding it harder and harder to think,word things breathe and see and everything I eat drink and do seems to make it all worse including conversing.My head symptoms are pain pressure crawling snapping and sometimes I get like a shudder going through my head!