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Originally posted by 5vforest:
We're still allowed to use first initials here, right? Can you give us the first initial of your doc's name?

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No, it's only last initials. The rule hasn't changed --

"5. You also agree not to post the last name, or the first name, of any person that treats Lyme disease. Instead, please use the first initial of the last name only, with the state, but not city. For example, Dr. B. in NY. This person's contact information should not be displayed on LymeNet. However, you may email this information. This is to protect those that treat Lyme and the Lyme community."
 

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Posted by farraday (Member # 21494) on :
 
I asked him your question. He said 6 months to a year is usual. He said that Mepron is the usual drug used for it and I think he said it is expensive, but I may have that part wrong.

But I must tell you that I have been on Bicillin shots for 18 months, the last 6 months on two shots a week. Today I learned that my immune system is sliding backwards, the Bicillin isn't cutting it anymore so I will have a new regimen.

Everyone is different. I have been ill for more than 20 years, have multiple infections and am probably older than most on this list. My speech and cognition are badly affected and it will take a lot to get me well.

That said, I will now be on Flagyl and Ketek for three months if I can tolerate it. If not, we will install a catheter and I will get Rocephan. He said it is quite common to try a variety of combinations of meds and to keep testing to know your infection levels to see how you are progressing.

I spent many years in a darkened room with an IV pump beside me and a wheelchair by my door. I am now out and about, teaching my grandchildren, playing my piano and can even read a book again.


This is wonderful progress, I thank God for it every day and appreciate every little thing in my life and am not upset by setbacks and new challenges nearly as much as I used to be. It is all relative!
 

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Posted by farraday (Member # 21494) on :
 
I'm sorry. I did not see the later posts.

I did once mention XMRV. He was not very excited about it. Since I definitely have lyme and other tick borne infections he said that treating with antibiotics is the way to go, regardless, and testing for XMRV would not be necessary.

I am afraid I do not know what arv's are or gc-maf? Oh, maybe you mean antiretrovirals. Again, he is treating my bacterial infections. That comes first. I think he believes that once the infections are held in check, the other problems will go away.

He is thoroughly monitoring my immune system....my spouse understands it better than I do. I try to do my best...I am always proud when I know what day it is! Each time I see him he has the bloodwork results from the three different labs he uses. I get the blood drawn a month before my appointment. There is measureable improvement seen by those tests.

We talked about the autoimmune disease that destroyed my thyroid gland and how it could be related to the bacterial infections from ticks. He said they are still working out how that relationship works. Autoimmune response is a tricky subject, it seems.

Oh, another interesting point he made today. Of the thousands of lyme patients he has treated over the years, NOT ONE has developed cancer. He is convinced that it is bacteria that starts the ball rolling to develop cancer.

He said that it takes 7 years for the body to develop a tumor, except in a pregnant woman when it is much faster. We lost a friend, a lovely young mother, whose cancer cost her her own life and that of her unborn child.

So maybe there is a good thing to say about all our misery! Our odds of developing cancer seem to be lower than normal, at least. I personally plan to live to 100 and maybe more!!

I am hesitant to mention who treats me because of my concern for him, his ongoing research projects and his patients. We think of the many who can be helped by his work and want to ensure that he continues his research and his caring for his patients.

This is all based on my understanding of what he said, but I am not a scientist and certainly not a medical professional. I am, however, an extremely experienced patient!
 

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Posted by MichaelTampa (Member # 24868) on :
 
Regarding the cancer, Hulda Clark, an MD and researcher, now dead, wrote a lot about how she felt parasites/worms played a critical role in creating cancer, that is simply would not happen without them.

We read recently some theory that parasites/worms actually farm these lyme spirochetes in our body for their food(just as people farm cows for food). Dr. K. seems to mention frequently that he thinks that treating the parasites is a vital early step in treatment of lyme.

So this may be the connection.
 

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Posted by viva (Member # 8183) on :
 
Unfortunately, Lyme and cancer can definitely co-occur.
 

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Posted by nefferdun (Member # 20157) on :
 
I am glad that you are improving farraday. I had to laugh about feeling proud of yourself for remembering what day of the week it is. I have the same feeling when I remember a person's name. I feel like a genius. It is wonderful to make those connections again.

I hope that is true about cancer but I don't understand it. If bacteria cause cancer, then why wouldn't be more likely to get it rather than less?

I think someone posted a while back how bartonella can cause skin changes, like crusty moles, and these can develop into cancer.
 

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Posted by farraday (Member # 21494) on :
 
Here is my spouse's reply: the bacteria that cause the cancers are different from the ones that cause tick borne illnesses. It is just that the antibiotics we take may also kill off the others incidentally.

A good example of that is how I got here in the first place. A chance septic infection sent me to the hospital for 6 weeks of intensive IV antibiotics...two of them daily. Not only did the sepsis disappear, so did many (but not all) of the symptoms I had been battling for many years!

But a year or so later I began to relapse and that is when we found the labs that test for lyme et al. We knew the abx worked, but we did not know why or how.

The briliant medicos called it "a miracle"! I never told them my name for them! Spouse gives hint: look for webs between their toes!
 

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Posted by canefan17 (Member # 22149) on :
 
MichaelTampa,

I've also heard those remarks in regards to Hulda Clarke.

What's her theory on why?

Because parasite are known for holding on to a lot of viruses? The same viruses that may be causing cancer?
 

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Posted by MichaelTampa (Member # 24868) on :
 
It is a little tough for the non-medical person (such as myself) to decipher Hulda Clark's writings. But, this is what I get from reading her stuff.

She has done a lot of looking at people with cancer, and looked for things she saw in ALL the people with cancer. One was parasites/worms. (I think some of us know that we all have these parasites/worms to some degree, so, this, in itself, doesn't really implicate them in causing the cancer at all.)

But she also saw certain chemicals. I really don't remember them all. I know one was isopropyl alcohol, she really felt that is also necessary for cancer to exist. They were quite complicated names, and, really, her two different books said different things. Like, one of her earlier books implicated this one chemical (don't remember the name), found commonly in some foods (maybe 10% of foods). So she would also strongly encourage people to not eat these foods also. Then, in a later book, the same chemical got much less play in terms of the big picture, the food avoidances for that one were gone, but it still played a role, caused by some other problem.

In a way, it's refreshing to be able to read someone's work and it's clear they were still working on things and updating their opinion with new data as they get it. That's what it's like reading her things. She simply did not complete her work, really. A lot of what she said was still evolving, as she got to the real culprits and how all the different bugs and chemicals interact.

I do think, though, she did learn and demonstrate, that parasites/worms play just a critical role in causing cancer, and while someone with cancer may have a real emergency that needs to be dealt with via surgery or whatever, long-term-wise, dealing with the parasites/worms is of critical importance. They allow the cancer to grow. Beyond that, the details, I don't remember what she said, and honestly, I don't think she thoroughly figured that out. You're asking about viruses, I don't remember her writing a lot about viruses, I don't think that was at the heart of what she was looking at (doesn't mean they're not playing a critical role).

And here we have Dr. K. saying one of the very first steps to healing lyme is to deal with parasites/worms. And some group in New York writing the theory that these worms are "growing lyme spirochetes for their own food, right inside our body".
 

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