VIRUSES??? Bacteria??? Fungus??? Oh MYYY!!! Protomyxoia anyone?

[xrunner]

I
So confusing in this jumbled up mess... WHAT CAME first??? The tick bite and Lyme Bactera, then viruses...then parasite? I need to bust out a crystal ball right now... Anyone have one???

I've been asking myself a similar question for the past year or so. Not sure anybody knows.
That's by the way one of the reasons I find "wide-spectrum" treatments such as gcmaf, rituximab etc. attractive.
All the best with your R. treatment.

 

[Mog]

What other tests did you have done? I have a holistic doc who is open for pretty much anything we can come up with. So I have had quite a bit of tests, but always looking for more ideas.

A comprehensive viral panel, an Igenex Western Blot for Lyme and a comprehensive gut analysis were probably the most useful for me,. They did others for vitamins, mitochondrial function, allergies but in terms of actually getting info on what I've got and what I can start to work on, I think the first three were the most important for me. I also tested for lactose and fructose intolerance; I am sensitive to fructose but haven't actually felt any better since limiting it. The doctor got excited because one of the tests discovered I had low iga in the gut but I'm not sure there's anything I can do about that.

There is also the methylation panel but unfortunately I didn't do that. Others will know about that better than me.

Somebody posted a list here in the forums, I think, of tests which you could/should get done. It was quite long... Unfortunately I can't find it again. Can somebody else please tell us the link?

 

[Jacque]

A comprehensive viral panel, an Igenex Western Blot for Lyme and a comprehensive gut analysis were probably the most useful for me,. They did others for vitamins, mitochondrial function, allergies but in terms of actually getting info on what I've got and what I can start to work on, I think the first three were the most important for me. I also tested for lactose and fructose intolerance; I am sensitive to fructose but haven't actually felt any better since limiting it. The doctor got excited because one of the tests discovered I had low iga in the gut but I'm not sure there's anything I can do about that.

There is also the methylation panel but unfortunately I didn't do that. Others will know about that better than me.

Somebody posted a list here in the forums, I think, of tests which you could/should get done. It was quite long... Unfortunately I can't find it again. Can somebody else please tell us the link?

Tell me about your Igenex test... Did you have positive bands - yet the test said negative??? I had 5 positive bands but the results still said negative...There was a further test I could have done...and I hear there are some awesome PCR tests in Europe... But I am DONE spending more money on more tests...only to tell me what I already know... I HAVE LYME... I just KNOW it... When I take ABX or sit in front of my Rife machine on Lyme setting...my symptoms go into ORBIT... I want to fly out of my body... That is all I need to know. I cannot attack the Lyme until I get all these viral infections under control... Because for some reason, in some peep, killing the Lyme activates the viruses... I was reading about Lyme herxes one day and stumbled upon that ....which then led me to XMRV info...and then to ME...and this site... Wow...what t wild riiiiiiide.... Would much rather be on a REAL roller coaster....

 

[Mog]

Hi Jacque,
My results were:
Lyme IgG/IgM Serology 0.36 LIV

Igenex Western Blot IGM result Negative
CDC/NYS result Negative
30kDa +
39kDa IND
41kDa ++
83-93kDa IND

Igenex Western Blot IGG result Negative
CDC/NYS result Negative
34kDa IND
39kDa IND
41kDa ++

Which I'm now presuming to mean I have got lyme, even though they say it's negative.

Sorry to hear you are having such a bad time when you take abx or use the Rife machine. You don't think you're "just" herxing when you get the bad reaction? Is the Rife machine good? I've heard of them but don't know much about them.

 

[Jacque]

Yes the reaction is "severe herxing" herxing that is intolerable... suicidal stuff... cannot tolerate... N yes I would say you have Lyme... think about it if you didnt you would not have ANNNNNY positive bands... is my theory...and the IND are the same.... There is a book on Lyme...can't remember the title that talks about that. How long have you been sick...? BC that is the problem... when you don't catch it quickly... it shows up as Indeterminate... Have you ever taken a Lyme killing agent? You might want to try it.... you will KNOW if you have Lyme when you do... Try some Samento or Olive Leaf..or any of the others...and monitor how you feel... you will know for sure...when you do... I like my Rife machine but don't use it like I should.... ugh have a hard time staying consistent with stuff bc of brain fog and just not even havin energy to get dressed somedays...

 

[Jacque]

Oh and when I use my Rife machine on the Lyme settings...I know within the next 48 hours all hell is gonna break loose and I feel like CRAP as it is... I understand the no pain no gain stuff... but just not strong enuf to tolerate a strong hers right now... There are Rife machines for about $500 that work as well as the exxxpensive ones...

 

[Mog]

I've been ill for 20 years so if it is Lyme disease, it will be well entrenched unfortunately I have just started taking Samento but I'm taking it very slow because I don't want a violent reaction, so can't really say if it's working yet or not. When I increased from half a drop to one drop, I did get more extreme fatigue than normal so I suppose that might have been some kind of herx reaction. I'm only on 2 drops so far, so at current rate of progress, it'll take me 8 months to get to the recommended dosage! I have taken olive leaf occasionally for colds but found it made me feel iller, which I thought was just it not agreeing with me but perhaps it was some kind of a herx. Very difficult to know what's going on all round.
Yes, it's very hard to stay consistent with things, I know. Especially when they make you feel worse, and you don't know if it's things getting worse before they get better, no pain no gain as you say, or if it's just things getting worse and worse and it's the wrong thing to be doing. What else are you taking for the Lyme? I was reading Buhner's book and he says to take smilax/sasparilla for herx reactions, but no idea if it's effective or not.

 

[Jacque]

Yah heard about the Sasparilla but haven't tried it yet... Tried everything else under the sun.. Coffee enemas etc... Oh ya... The best part of wakin up is Folgers up your butt... I have just backed off the killin of the Lyme while I am doin the Rituxan...but prob should at least do my Rife every 13 days...but like you said then it is hard to tell what is doin what... My herxs were not extreme fatigue... they were muscles, nerves, and bones on FIRE...and brain on fire too.. headachey... you will definately know... it will be a lot more than a little more tired... I think the Olive Leaf told ya what you are questioning...and yes after 20 years it is a part of you... Some people can tolerate the killing of the Lyme with Abx etc... But in my Case I am the DREADED HLA profile where my body cannot rid itself of biotoxins...ughhhhh WHYYY ME... Why does everything have to be so difficult??? Went shopping tonite and had to come home my legs were burning so bad... Just so tired of not bein normal... you are smart to go at the Samento sloooowly... keep me posted how you do...

 

[Mog]

Have investigated coffee enemas but never been brave enough Good for you for trying them.
Your herxes certainly sound horrible and the real deal
I haven't heard of the HLA profile. What's that?
Hope you can make some progress with your treatment and get some improvement soon.

 

[Sherlock]

Love the stalking the wily histamine sub title sherlock - is that an homage to the stalking the wild pendulum book?

Hi, Sian. Nope, I hadn't heard of that book - but I see some videos out there so maybe I'll listen tonight. My stalking was only referring to the deerstalker hat. I'd read all those Holmes stories decades ago.

 

[Jacque]

Have investigated coffee enemas but never been brave enough Good for you for trying them.
Your herxes certainly sound horrible and the real deal
I haven't heard of the HLA profile. What's that?
Hope you can make some progress with your treatment and get some improvement soon.

Flew across the country to see Dr. Shoemaker in MD... who wrote all of the books on Bio Toxin Illness. He runs certain tests and finds our if your immune system can eliminate toxins (mold, Lyme, etc) There is the Dreaded of the Dreaded.... and the Dreaded... I was the Dreaded... My body cannot eliminate the die off from the Lyme bacteria as they die and put off toxins...so I get deathly ill... All so complex and frustrating. Makin progress...been vertical for last 3 days and more energy... who knows what tomorrow will bring huh???

 

[sianrecovery]

I'm dreaded of dreaded...but I'm not convinced by dreaded.

 

[Jacque]

Did you see Shoemaker too?? The only reason I know there must be something to it is when I do something to kill off Lyme.... I herx 10x worse than anyont else... Have you noticed anything like that?

 

[jimells]

Am I the only one on here that never has anything show up on tests?!

This has pretty much been my experience. I think part of my problem is that they keep ordering tests to rule out other illness, which is appropriate, but they won't order any tests for the dysfunctions commonly found in people with this illness, tests that might actually inform treatment. For example, I've had THREE ANA screens so far this year. They are all positive. But no one will order a test of the NK cells.

I've been diagnosed with hypertension (which I don't have), high PSA (which isn't a disease), COPD (my breathing is fine), cervical stenosis (more overreading the XRay), rebound headaches (bogus), seeking attention, chronic depression, and probably a few others I can't think of right now. I have finally been diagnosed as having CFS, but I still can't get tests useful for treatment decisions.

Instead of doctors testing patients it's past time for patients to test doctors -- with a competency test!!