I am still treating lyme via my LLMD but also doing IV Phophotiydal Choline (2x week) and Myers cocktails (1 x week).

I asked about Questran and MSH and neg coag staph.............

Her amswer to me is " once we have your immune system working, then many other things will fix themselves."

She wants me eventaully, not right now , stop ABX.

And I am as sick as a dog. So that could be alternative not so realistic claptrap. Of course I am doing everything I know how alternativewise, as you are, to further build it up.

Once, IMO, lyme takes hold, after the immune system has let you down, it is a different ball of wax.

The only way the immune system can work against lyme is if you have a very strong immune system before you get infected, but once you have chronic lyme the immune system by itself will never work.

IMHO, we have to be treating from every known angle (traditional & alternative) AND keep our minds open & flexible always.

Robi, how much phos choline do you take by IV and do you get any insurance coverage for that and the cocktail?? So, are you on IV ABX also?

Bb is a very cunning bacteria & not very well understood "yet" even by those who have studied it extensively.
For those dedicated to the treatment it is still a mystery and a trial and error situation. For that reason I'm wary of claims by alternative practioners who make simplistic claims. In my experience, most of them don't really understand the bacteria despite their claims to the contrary.

So......my questions to myself always are, how can I listen with an open mind and incorporate the best of both worlds? And how can I remain hopeful & open without falling into false hopes?

As lymelady has said, according to her tests, she's in good shape BUT sick as a dog!! That goes for many of us!

Meanwhile, "I pray for a good harvest and continue to hoe"!!! I'm currently on IV & oral ABX, IV mag and high B vits along with lots of oral supplements.

Healing thoughts......lightfoot

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]

"A friend is someone who knows the song in your heart
and can sing it back to you when you have forgotten the words".
Unknown

I have always believed, as well, that a good immune system would protect me.

Recently I saw a medical article that indicated in spite of aggressive immune response, the Bb was still able to maintain a persistent infection.

Now, I still think we need an adequately functioning immune system. For many reasons, because Bb is usually not our only problem. But I don't know if improving immune function will be adequate on its own.

I think Lightfoot's comments are very valuable. Keep an open mind, on both sides, but observe what the actual response is to the treatment, and adjust accordingly.

What is needed to get well seems to be very individual. We don't know all the factors involved. I figure, if a protocol helps, it doesn't matter to me if it is a placebo effect.

On the other hand, it doesn't matter how many good studies there are showing something works. If it doesn't work for me, it is not the correct protocol. For me.

quote:

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My tests through J. clinic (extensive) showed my immune system to be working very well much I guess to their surprise. By immune system numbers, they wrote "very good."

And I am as sick as a dog.

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in order to get a full, comprehensive picture of your immune system status it is imperative to see a certified immunologist.

my immunology testing was normal by regular testing parameters by my LLMD.

there is more invasive blood testing which should be done.

my overall IgG (overall immunoglobulins; antibodies that fight infection(s)) was low/normal but my IgG subsets, tested by my immunologist, were abnormal low.

my overall T cell count was normal, but my T cell mitogens (T cell lymphocytes, etc) were extremely low. even the immunologist was quite surprised at this.

no internist/LLMD (let alone an 'alternative' non-md practioner), is trained to administer or adequately read these type of immunology tests.

hence an expert immunologist is extremely important.

my immunologist has had success treating recalcitrant Lyme patients with IV gammaglobulins alone (e.g. without abx) with good success.

usually takes about a year of infusions, two to three a month.

I feel I have to start building my immune system in order to help myself.

If the immune system was very run at the time I got lyme. Then I believe it contributed to getting sick. I was under alot of stree, oter than the lyme, WHen I was bit. Remember, many get bit without getting sick. They may have it, but it is suppressed my their immune system.

I have to believe I can get to a point, after knocking it back with ABX, that my system will keep it in control. Is this misguided thinking?

I do appreciate all the feedback. Maybe I wasn't clear in stating that I do see an LLMD and I am still on ABX. I plan to continue on ABX for now. I still have to do a cystbuster and still have symptoms. So, while I am not done with ABX yet.........I imagine I will be someday. I hope I have another 30 or 40 years to live ( I am 44)...or is this misguided as well?

I can't imagine being on ABX continually that long....certainly that would kill me.

So, I will do all I can to build my body/immune system. Kill the infection and hopefully go on and have a return of life as I once knew it (or at east a close facsimilie.)

Lightfoot: I am not sure of the dose of PhosChol...I have asked for a copy of the paperwork. Also, I have not submitted a bill to insurance yet so I don't know what they will pay..........hopefully at least some of it.

Let me know what youse guys think.

robi

but I do know that you can't just "kick the immune system in the arse" so to speak, and it will take care of the infections. If that were the case, we never would have gotten sick in the first place.

BUT, I do believe one must BUILD the immune system and that immune system is taxed in the first place due to all the infections and garbage polluting the body.

Build and kill, at the saem time. Its the only way to go.

If immune function is found to be poor, what does your alternative doc recommend to "fix" it?

Is your alternative doc saying that Lyme itself caused your immune system to go south to start with?

If so, why would you get Lyme in the first place if you were in good health with good immune function when you were bitten by that tick?

Sorry, but the doc's reasoning seems a little off to me.

BUT also keep the immune system up.

Find out, if you have any real food allergies, find out if STRESS is bringing your immune system down.

Find out if you have any other chronic infections... kill them.

Viruses do not count I feel, I believe once lyme is under control, the herpes and other viruses go into remission. Mine did, my herpes is into remission now.
that means my immune system is fighting better.

Candida overgrowth for SOME can make them never able to be completely be well from lyme... candida toxins can lower our immune systems... I know this because my herpes came out when my candida overgrowth was really terrrible ON antibiotics. Once candida under control, herpes back into remission.

I belive our immune systems are incredible... the more I look at others who do not have lyme, and how they live and dont get sick. LYME is one powerful bacteria that scare me to the point of FEAR death.

I cannot believe that this bacteria has the ability to MAKE US SO SICK, and that it takes SUCH TOXIC DRUGS to kill it, I mean, can you people? believe that such an SOB! exists?

I believe that possibly we will ONE DAY figure out this SOB! in us, and we will win! we will figure out the way they trick our poor immune systems.

Possibly working with a ND, can help you to find other areas of ill health that MAY be lowering your immune system.

STRESS is a huge thing, diet is another.

Stress lowers the white blood cell count, so cannot fight lyme as well.

Herxing on Doxy here so, hope this is ok to understand.

quote:

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Originally posted by ConnieMc:
How do you test immune function?

Guess you go to an immunologist.

If immune function is found to be poor, what does your alternative doc recommend to "fix" it?

We are doing intracellular vitamin and mineral levels test and adrenal function test (with spit). We are starting by supplementing IV Vitamins, Phophotidyal Choline. We will adjust when test results come back.

Is your alternative doc saying that Lyme itself caused your immune system to go south to start with?

No, was probaly the "last straw".

If so, why would you get Lyme in the first place if you were in good health with good immune function when you were bitten by that tick?

I had just made a major move across country ( not by my choosing) and was under a huge amount of stress.

Sorry, but the doc's reasoning seems a little off to me.

IMO, do both. Raise immune function AND treat the bugs. That makes the most sense

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Yes I am doing both......juut think you have to do both to be successful........that was really what I wanted input on....I didn't really ask the right question...........bad brain.

Connie how are you doing? and what is alternative treamant doing for you? What kinds of tests and tx are you doing? I would love to know what your doing that is helping.

robi

I am doing vitamin infusions which include numerous things. Vit C, Mg, etc. At first they were weekly, now every other week. Doing injections of B vitamins, Mg, folic acid, etc. Also taking boatloads of supplements which were tailored to my situation based on an ION profile I had. We are also looking at metals. I didn't test high on any, but I understand the mercury test isn't necessarily accurate. Supposed to have a challenge test soon.

I have also discovered problems with my hormones, likely due to these diseases. I was put on HRP a couple of years ago, and was found to have double the levels I should have. So we are playing around with all that too.

Recovery has been slow. Still have dramatic ups and downs. But my up times are now much better than they were.

There isn't always a rhyme or reason to why I suddenly start doing poorly for a few days. Wish I could figure it out. But no success yet.

The fact that this illness is so unpredictable is what drives me crazy!

But, IMO, this will all help.