Beaver gets Lymed. (Trimethoprim, Plaquenil?)

[Lotus97]

Hey Helios

You sound similar to me. I wasn't sure whether to be pleased or not.
Fortunately, people have responded much more sympathetically when i say i have lyme. They just go quiet when i say i've got cfs. It seems to be more legit to them, and takes some burden off me.

I was happy to know what was causing my illness. I just don't I have any viruses in addition. Since I've had joint pain for the past 5 years I was diagnosed with fibromyalgia (I had various diagnoses before that as well). That seemed to go over better with people, but it still doesn't explain why. And after some research, it seems the symptom list for CFS, ME, and fibromyalgia are almost identical. We still don't know exactly what's going on with everyone and why different illnesses cause the same symptoms.

 

[GcMAF Australia]

Hey Helios

You sound similar to me. I wasn't sure whether to be pleased or not.
Fortunately, people have responded much more sympathetically when i say i have lyme. They just go quiet when i say i've got cfs. It seems to be more legit to them, and takes some burden off me.

This may be in part the work of 'Today tonight' in WA, which gives lyme lots of air time and scares the heck out of people.

I've been on my regime for about a week and a bit. I'm slowly building up dosages.
It's been a bit nasty some days, with yet more downtime to deal with. But so far it's do-able.

One thing that surprised me was pain that started in the area of my upper right wisdom tooth, jaw and ear two days in. The very tooth that was infected and had to be removed the same week i got the precipitating virus all those years ago. (3.5 years)

Now my little lyme brain is suspecting that a part of my onset may have been from anaerobic bacteria in in the tooth cavitation.

Connie Strasheim's book, Beyond lyme disease suggests just such a thing with some folk with lyme.
The plot thickens.

Anyway, whatever the pain was from, it has gone. Today i felt relatively strong and mowed my front lawn with no problems. Time will tell.

Don Lewis in melbourne says that when GcMAF gets the immune system going, then as it is acting where the problem is , then this causes the effect to be felt where the problem is.
So the area around the tooth makes sense.
The Lyme awareness campaigns are hitting pay dirt.
Every day people are on fb telling of people they have helped, and more awareness.
Fed govt set up a high Committee at top level.
may 11th world wide lyme awareness protests.
many in australia<
Bell tower to be lit green

 

[GcMAF Australia]

Toronto's CN tower and the Peace Bridge in the USA and Niagara Falls (Canada, USA border) are lighting up green, Perth's Bell tower and (from memory) Council House (a govt. building) are lighting up green in Australia.

 

[SickOfSickness]

This from your original post is where I am.

I was a fence sitter on the Chronic Lyme debate. I really don't like the sound of long term antibiotics, or their success rate. Nor does the CDC and NIH.
Now i'm starting to take the stance that as horrible as some of the pharmaceutical treatment sounds, the case studies and post mortems on lyme victims sounds worse!
It is one nasty bitch of a bacteria that seems to elude treatment very effectively.

Does the CDC's Post infectious lyme autoimmune explanation make more sense?
I don't know...but one could die waiting for definitive answers.

Should i believe the testing and the doctors verdict?.. Well, i don't know. But i have to make a choice, Yay or Nay very shortly.

Well, I am not on the fence, treating myself for Lyme is not on my list yet. I see you decided and started last week. I would probably treat myself if my infection was newer, with higher positive levels, and if I had exposure to infected ticks or a definite bite. I agree with the posters who said it's very hard to eradicate. I don't think I can handle going through that.

 

[GcMAF Australia]

This from your original post is where I am.



Well, I am not on the fence, treating myself for Lyme is not on my list yet. I see you decided and started last week. I would probably treat myself if my infection was newer, with higher positive levels, and if I had exposure to infected ticks or a definite bite. I agree with the posters who said it's very hard to eradicate. I don't think I can handle going through that.

Lyme can be chronic,
lying almost dormant but doing great damage
The damage is not related to how long ago the tick bite occurred or bacteria levels.
these trhings just have not been studied.
The effect of antibiotics is also a very good question.
Some people are using other techniques

 

[beaverfury]

Don Lewis in melbourne says that when GcMAF gets the immune system going, then as it is acting where the problem is , then this causes the effect to be felt where the problem is.
So the area around the tooth makes sense.

Hi GcMAF

This seems to be what was happening with me.

I'm not a great detective. It has taken me years to pinpoint a problem in this area.
At least by taking the leap into drug treatment this problem has uncovered itself.

I just don't know if it is a co-infection of anaerobic bacteria that has weakened my immune system and allowed lyme to flourish, or if it is actual borrelia that have got into the the jaw area? It's uneducated guesswork for me at the moment.

Lyme can be chronic,
lying almost dormant but doing great damage
The damage is not related to how long ago the tick bite occurred or bacteria levels.
these trhings just have not been studied.
The effect of antibiotics is also a very good question.
Some people are using other techniques

Connie Strasheim suggests that long term antibiotic use can weaken your immune stystem.
This doesn't please me.
I've told myself that i will only do six months of antibiotics. But...never say never.

 

[beaverfury]

Well, I am not on the fence, treating myself for Lyme is not on my list yet. I see you decided and started last week. I would probably treat myself if my infection was newer, with higher positive levels, and if I had exposure to infected ticks or a definite bite. I agree with the posters who said it's very hard to eradicate. I don't think I can handle going through that.

Hi SOS,

Did you get positive test results? I'm becoming glad that i saw the ticks on me and that my test results seem quite positive. It at least gives me some clear direction in my head. (Positive outcome is different matter.)
It's awful not knowing one way or another.

I'm getting my butt slightly kicked by treatment though.
Trimethoprim= no sleep. Didn't get to sleep until 3.30am this morning. Normally sleep is not a problem for me.
But now i seem to be amped up at night.

Maybe i shouldn't have mowed my lawn yesterday, because today i woke up thoroughly smashed.

 

[GcMAF Australia]

People are getting diagnosed 10-20 years after a tick bite,
Some have no recollection of tick bites

 

[SickOfSickness]

I got positive results by ILADS standards. Probably a waste of money if I don't want to do the antibiotics courses the ILADS doctors say I need. I should have spent it on something else.

 

[Lotus97]

I had been making a slow, but gradual recovery over the past few years until I started to relapse at the end of last summer. I don't know anything for sure, but I'm thinking part of it could have been Lyme being reactivated. I'm not sure if I would have been better off treating it or not back then, but now I'm too sick to do any treatment.

 

[beaverfury]

UPDATE. Good news.

I have made great progress so far. The first three weeks were very hard, mainly because of lack of sleep but also with a little pain and an unpleasant nausea, especially when raising the dose of Trimethoprim.

The target is 600mg of Trimethoprim. I am at 450mg now.
At 300mg, and with the aid of some sleeping tablets, i felt pretty bloody good. Just like the old days.
I didn't get any energy slumps and my body felt clear. No' lack of oxygen feelings' and no 'funny head symptoms'.
Cognitively i'm good. Bright and happy.(My memory is still unimpressive.)

The problem is that every time you raise the dose you get a few days of bad symptoms again, but gradually you adjust.

I felt so good last week that i started drinking red wine for the first time in years, which was a poor idea as it set me back again.
But i have started to consider employment again and have been more active and social.

In short, i am amazed at my progress but am still in the process of dips and troughs as i increase medication.
I guess i wont know for sure how i am until i stop medicating.

I have to say that benzos are pretty amazing as muscle relaxants as well as sleeping tablets. I have had several days where i woke up with no muscle pain. A completely clear body.
I hadn't realized that my muscles had been clenching in my sleep, but they must have been to wake up feeling as i have for the last 3 n half years.
Note: the benzos were my idea, not my doctors.

I still think part of my problem was some sort of infection in a wisdom tooth cavitation. Maybe that's why i have responded so quickly. But i'm only guessing.

 

[GcMAF Australia]

UPDATE. Good news.

I have made great progress so far. The first three weeks were very hard, mainly because of lack of sleep but also with a little pain and an unpleasant nausea, especially when raising the dose of Trimethoprim.

The target is 600mg of Trimethoprim. I am at 450mg now.
At 300mg, and with the aid of some sleeping tablets, i felt pretty bloody good. Just like the old days.
I didn't get any energy slumps and my body felt clear. No' lack of oxygen feelings' and no 'funny head symptoms'.
Cognitively i'm good. Bright and happy.(My memory is still unimpressive.)

The problem is that every time you raise the dose you get a few days of bad symptoms again, but gradually you adjust.

I felt so good last week that i started drinking red wine for the first time in years, which was a poor idea as it set me back again.
But i have started to consider employment again and have been more active and social.

In short, i am amazed at my progress but am still in the process of dips and troughs as i increase medication.
I guess i wont know for sure how i am until i stop medicating.

I have to say that benzos are pretty amazing as muscle relaxants as well as sleeping tablets. I have had several days where i woke up with no muscle pain. A completely clear body.
I hadn't realized that my muscles had been clenching in my sleep, but they must have been to wake up feeling as i have for the last 3 n half years.
Note: the benzos were my idea, not my doctors.

I still think part of my problem was some sort of infection in a wisdom tooth cavitation. Maybe that's why i have responded so quickly. But i'm only guessing.

dental problems and things around the neck and sinuses seem to be a major thing with Lyme.
also the muscles.
I am so glad you are getting some where.

 

[GcMAF Australia]

"In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in history because elements of academic medicine, elements of government and virtually the entire industry have colluded to hide a disease."
Dr K Leigner

 

[Ema]

"In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in history because elements of academic medicine, elements of government and virtually the entire industry have colluded to hide a disease."
Dr K Leigner

God, that "shameful handling" list is going to be a long one...hope future generations are better prepared!

Ema

 

[beaverfury]

Well, well. Things are not so rosy now are they, monsieur beaver?

I've had three plus weeks of nausea and very poor sleep. Mighty, mighty peeved.

Shamefully i confess, i need a break from these symptoms so i have dropped my dosage down to a quarter of the recommended trimethoprim dose and half the plaquenil dose.
In short, i am not hacking it.

I'm not feeling quite so positive about this treatment now, but my attitude fluctuates rapidly with my wellbeing on any given day. Reading stories of others failing response doesnt help matters.

Hopefully i can report more positively in weeks to come. It just shows how recalcitrant and unpredictable these conditions are (lyme,me/cfs).

 

[Ema]

Well, well. Things are not so rosy now are they, monsieur beaver?

I've had three plus weeks of nausea and very poor sleep. Mighty, mighty peeved.

Shamefully i confess, i need a break from these symptoms so i have dropped my dosage down to a quarter of the recommended trimethoprim dose and half the plaquenil dose.
In short, i am not hacking it.

I'm not feeling quite so positive about this treatment now, but my attitude fluctuates rapidly with my wellbeing on any given day. Reading stories of others failing response doesnt help matters.

Hopefully i can report more positively in weeks to come. It just shows how recalcitrant and unpredictable these conditions are (lyme,me/cfs).

It's not shameful to take a break! You're not failing...it is a marathon, not a sprint. Hang in there!

Ema

 

[beaverfury]

It's not shameful to take a break! You're not failing...it is a marathon, not a sprint. Hang in there!

Ema

Cheers, Em. It certainly is a marathon.

It's like Mike Tyson knocking me back on my ass every time i stand up.

Hopefully he will take a drinks break soon.

 

[Creekee]

beaverfury: how are you doing these days? Interested in your current take on abx treatment. Hoping you're seeing mucho improvement...

 

[beaverfury]

Hi Creekee, Thanks for asking.

Well.... I have made some improvements,( it depends what day you ask me). But i'm still not happy. I could be a lot better.

I should be grateful. Some symptoms have lessened considerably after 5 months of Abx.
For instance, I don't get that lack of oxygen feeling where I have to sit down every five minutes while doing something.
In fact, some days I can tick along all day if I take things easy. I couldn't do that before.

My gut feels better, and my cognitive ability has improved to the point where I can concentrate well. I have started painting (art) again because of this improvement.
(Some of the cognitive improvement I could probably attribute to the GAPS diet I had undertaken earlier).

In five months of treatment I have had about 3 separate periods of about a week each where I felt pretty much back to pre illness health.
It was great! For the first time in four years my body relaxed and felt free. I had no pain in these weeks.
But...it didn't last. My body cycles back into illness again. ( I should have diarised this for patterns).

I am still no better with exercise. I still crash badly if I overdo it. Same as before.
I still have pain like before, particularly in the morning.

The symptom which has got worse is my muscles locking up while I am asleep, generally in my neck, shoulders, back and chest. And of course this affects my sleep quality.

So... all in all, many better days, which I didn't have before, but still many bad days, some spent in bed.

I should be happy for the improvements but i'm an ungrateful shit. Life is still difficult and my health still fragile.
I want nothing less than my old body back.

I'm really confused as to whether I should continue Abx up to 12 months. I don't know if I sounded convinced about the whole lyme thing before, but now i'm undecided.( It changes weekly).

 

[beaverfury]

beaverfury: how are you doing these days? Interested in your current take on abx treatment. Hoping you're seeing mucho improvement...

I just read my previous posts where I was having much trouble just taking the Abx for side effects and I have to report that it is very bearable now. Once you get a couple of months on the right dosage these side effects lessen and you hardly even notice you're taking them. (Apart from my muscles locking up in my sleep. That's pissing me off).