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Claudia
Member in Phase 3
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Posted: Fri Nov 25th, 2005 12:38 |
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Now I'm worrying about my son (now 20). When he was 4 we went camping in Yosemite and a few weeks later I found the "classic" Lyme rash on his leg. I took him to a doctor right away and he was given pennicillin (I think that's what I remember). End of story.
The doctor assured me that would be the end of it, because we "caught it right away." But now reading all this about it scares me. He is the healthiest one in the family, but a mother worries...
Thanks, Claudia
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MP Phase1 23Mar_06; Phase2 July 10_06; Phase3 Nov 4_06. Dx Thyroiditis (Thyroxine); arthritis; glaucoma; CFS (1988-92);Kidney & bladder probs. Feb06 1,25D=43.3; Aug07 1,25D=27.5; Feb06 25D=44; Aug07 25D=28; Nov07 25D=36; Mar08 25D=16.4
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Aussie Barb
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Posted: Fri Nov 25th, 2005 18:26 |
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Claudia
see information in Will re-infection occur if my partner or family members are not treated?
Am I contagious?
Some of my family members appear to have Th1 inflammatory symptoms. What should they do?
and LYME/BORRELIOSIS Definition, symptoms, transmission, testing, treatment
Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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GeorgeinRollaMO
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Posted: Sat Nov 26th, 2005 09:32 |
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Claudia,
You do not need "to worry", or be scared, about your son. Perhaps, concerned, yes! However, we live in the right age. The treatment, if it is truly needed, is here today!!! The Marshall Protocol!
After learning all I have on this forum, I realize that I must have been infected in the Spring of 1958 by a tick bite. I had my first run-in with too much sun in August of that year. I had been sailboating all day, and exposed strongly to the sun. I came down with what I thought was a "sun-stroke". Then, had problems throughout the years afterwards with sun exposure. But I seemingly acted healthy through all of those years. And, I was able to pass a FAA flight physical twice a year and a company flight physical once a year. I really thought that I was very healthy!!! But looking back, I see that I did not have quite the energy that some of my contemparies had. I seemed to have to parcel out my energy to do what I had to do.
My wife was bit by a tick in the summer of 1999, and came down with troubles. We both did Western blot tests for Lyme in August 1999. While she did not pass the criteria for CDC Lyme disease, our LLMD said that she had the disease according to her clinical symptoms, and treated her accordingly. My WB test, which I was just doing to have a "base" for comparison for future use, if necessary, came back, interestingly, with two titers for borrelia. I felt great! No real indication of any trouble or disease.
Then, at the end of March 2000, I got bit by a tick, and started to crash! I got bit by a few more ticks in the months just afterwards. Finally, I did a second Western Blot test in August 2000, which did not pass the CDC criteria for Lyme disease, but had many titers for borrelia. Based upon my symptoms, our LLMD did treat me according to the ILADS LLMD AP (antibiotic protocol)...heavy, varied antibiotics over a long time. I went into remission, and relapsed three times. It seemed that as long as I was on the LLMD's antibiotics, I was doing ok. On the last remission, I went perhaps six months with no major symtoms. But then, at the end of May 2003, I was bit by a new tick, and came down with the "flu", while I was the only person with the "flu". I saw our LLMD a.s.p., and did a Bowen q-RIBb test, which looks for the bacteria itself (versus the other test that looks for the antibody to the bacteria that the body produces). My results came back Positive, and at the highest dilution ratio, 1:128 (read, one to one hundred and twenty-eight). I continued on the LLMD's AP, and after nine months, did another Bowen test, which also came back Positive and at the highest dilution ratio.
Two months after my first Bowen test, we had my wife do a Bowen test. Her results came back Positive, also, but at only a dilution ratio of 1:16, even though we believed at the time that she was infected nine months ahead of me. Twenty months later, without any further treatment, my wife's second Bowen test came back at a dilution ratio of 32. She needs to do the MP, and will.
If you will follow me closely on what I have said, you will see that these CWD bacteria are SLOW growing. If your son is not showing bad symptoms at present, there is a good likelihood that it will be some time before he does start to show bad symptoms.
I have a friend, who I finally convinced to have a Bowen test done within this year, and his results came back Positive and at the highest dilution ratio, too. His symptom that caused me to suggest him to do the Bowen was his Parkinson disease tremors and diagnosis. He believes that he has had the borrelia in his body for at least fifty years, back to when he was bit by a tick in Wisconsin. Most of those years, he had no trouble, also. I am awaiting his doing the MP.
I have another friend, who grew up in the Ozarks, and has lived amongst them for most of his seventy-six years, who I finally convinced to have a Bowen test done too, because he had the same nocturnal lower legs spasms that I have had for the recent few years, along with a few other symptoms that I saw the possibility of being caused by a Th1 inflammation. His results came back Positive and at the highest dilution ratio, too. He has started the MP. He thought that he was healthy for most of his life, and I had a hard time convincing him to do the Bowen.
I think that both of these cases do show that the borrelia can sit in our bodies for a very long time without causing problems. That is why I tell you to not be scared or worry... too much. But be concerned! And have your son do certain tests to see if he does indeed have the Bb (borrelia burgdorferi) in his body.
I am aware that the Staff of the MP, Dr. Marshall, and Dr.Greg Blaney, M.D., all suggest that one do a "probe", which looks for the person to herx. If the person herxes, there is a high probability that "yes" the person has the Bb or other CWD bacteria. However, my second friend that I mention above, has started the MP, and has taken up to 75 mg of mino plus Benicar plus dodging light/vit D.... and my friend has not herxed yet. I think that this would qualify as a "probe", and would indicate to him that he has no CWD bacteria in his body. Yet, his Bowen test results came back at the highest dilution ratio. I, personally, do NOT think that the "probe" mentioned on this forum is capable of producing 100% accurate results. The "probe" will catch other CWD bacteria that the Bowen test does not catch. IMO, Bb (borrelia burgdorferi) are one of the most widespread CWD bacteria in the world, thanks to migratory birds mostly, and should be checked for, if one wishes to be conservative.
I strongly suggest that if you can afford the costs, that you have your son tested by the Bowen q-RIBb test (done only in Florida, USA). Go to http://www.bowen.com for FAX number, telephone, etc. The last that I heard, the lab cost is $250US, plus you will have to ship the blood sample by FEDEX Overnight Priority air shipment (or other such service). Your ordering medical doctor needs to register with them, which can be done by FAX.
Dr. Marshall has mentioned that an ID specialist in Germany is sending a sample from all the people he sees for sarcoidosis to the Bowen lab and the Jardin lab in So. Africa. The results are coming back 100% Positive from both labs for Bb and rickettsia, respectively, and at the highest dilution ratio.
Then, if your son's Bowen RIBb test comes back Positive, that you do the 125D and 25D hypervitamintosis test, which insurance generally will pay for, to see if he does have the Th1 inflammation. I suspect that it will show that he has the Th1 inflammation, even if it is really not affecting him much yet.
I think that this is the most conservative approach that is available to us today....and at the least costs. Docs can do dozens of test that will give inconclusive results, and costs you tens of thousands of dollars. I know one person who has spent over $50,000US, in addition to what the insurance paid, on useless testing.
If he tests Positive on both of the above tests, you might consider doing the tests yourself and/or for other family members.
Back to my story.... in April 2004, after testing Positive and at the highest dilution ratio on that second Bowen test after doing the ILADS LLMDs AP (antibiotic protocol) for nine months, including using one of the supposedly strongest antibiotic weapons against the bacteria, Flagyl, I was very depressed about not getting anywhere fast.
I heard about the MP about seven weeks later. Read the older site, http://www.sarcinfo.com, decided that my symptoms were caused by my Th1 inflammation caused by the CWD borrelia bacteria, did the double vitamin D tests, and started the MP on September 1, 2004. Eight months later, the results of a Bowen test was still Positive but at the dilution ratio of 32. Three and a half months later, another Bowen test result said that my dilution ratio was only 16!!!! I expect to get a Negative test result at some time in the future, and be "cured" at last. Dr. Trevor Marshall has said that one lady, who did the MP for fifteen months, has gotten a Negative Bowen test after being Positive.
The MP does work! Dr. Trevor G. Marshall, Phd, has deduced the correct pathogenesis of this disease and the ONLY protocol that truly kills the bacteria. He was looking for an answer to his diagnosis of sarcoidosis that was EXTREMELY troubling for him. His medical doc had given him a notice of only eighteen months to live. He is "cured" and very energetic today!!! And so are something in the order of two hundred other sarcs. There are many people who do not post.
And you should be particularly proud of him, too. He is from Down-Under, too, and trained at the same Western Australia Un where Dr. Barry Marshall, M.D., trained. This latter Marshall was the medical doc who discovered that h.pylori bacteria cause stomach ulcers, and was awarded with the Nobel Prize in Medicine recently.
Be concerned for your son! But relax! Do not be scared or worry overly.
Best wishes!
George
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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Claudia
Member in Phase 3
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Posted: Sun Nov 27th, 2005 00:57 |
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Dear George,
Thank you for your in-depth reply. You seem to know everything there is to know about Lyme. But nobody has quite answered my query, so I'll ask it another way. Does the single course of pennicillin generally kill off the Lyme bacteria if you take it within a short amount of time? (a couple of weeks after the bullseye rash appeared) This was almost 15 years ago; I don't know what the standard protocol would be today. I just wonder what the chances are that he was "cured" by the brief round of antibiotics.
I'm not panicking about the thing with my son, it's just that this website has made me think about it again after so many years. I want to know more so I can talk to my son and make him aware of it, in case he ever becomes ill. Right now he is very healthy, but when he was going thru puberty he had bouts of weird brain-activity, a bit like peti-mal seizures that were investigated by several doctors. Everyone looked for epilepsy and did not find it. Then one specialist diagnosed a sort of painless migraine, which sounded right, since he did have migraines as a child whenever he was sick with a virus. He hasn't had any of that for several years now and we thought it was all resolved, but perhaps it could be a symptom of mostly-dormant Lyme? What do you think?
Oddly, our son is a complete natural-born troglodyte!  He prefers to stay up all night playing computer games and works an evening shift. He tends to sleep in the day. He has very fair skin and eyes and shuns the sun by nature. He also has refused to eat fish for years (no flesh food other than lean chicken). He never uses butter on anything and doesn't drink milk either. And to think I used to worry he didn't get enough Vitamin D !!!
Cheers!  Claudia
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MP Phase1 23Mar_06; Phase2 July 10_06; Phase3 Nov 4_06. Dx Thyroiditis (Thyroxine); arthritis; glaucoma; CFS (1988-92);Kidney & bladder probs. Feb06 1,25D=43.3; Aug07 1,25D=27.5; Feb06 25D=44; Aug07 25D=28; Nov07 25D=36; Mar08 25D=16.4
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Dr Trevor Marshall
Research Team
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Posted: Sun Nov 27th, 2005 01:18 |
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Claudia,
Penicillin is a bata-lactam antibiotic, like the cephalosporins. They actually create the type of L-form bacteria (which cause chronic Th1 immune disease) as they kill off the easily-seen blood-borne bacteria. That is one of the reasons chronic Th1 immune disease has increased so dramatically in the post-antibiotic era.
So the issue is whether your son's immune system was able to deal with the L-forms, or whether some took hold. And that is an imponderable, I am afraid.
If you think it is Lyme then (IMO) it is worth getting a flouresecent antibody test, and Bowen labs provide a commercial one right now (q-RIBb) which seems very good to me, although the CDC have expressed doubts about whether it is valuable diagnostically.
..Trevor..
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Claudia
Member in Phase 3
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Posted: Sun Nov 27th, 2005 01:45 |
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Thanks, Trevor. Now I understand.
Do you know if we can get that test done in Australia?
You are the Wizard of Oz! We need more heroes like you back here. I've had enough of athletes & movie stars. Are you another intellectual refugee? They'll want to claim you again when you get a Nobel Prize, I bet...Last edited on Sun Nov 27th, 2005 01:51 by Claudia
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MP Phase1 23Mar_06; Phase2 July 10_06; Phase3 Nov 4_06. Dx Thyroiditis (Thyroxine); arthritis; glaucoma; CFS (1988-92);Kidney & bladder probs. Feb06 1,25D=43.3; Aug07 1,25D=27.5; Feb06 25D=44; Aug07 25D=28; Nov07 25D=36; Mar08 25D=16.4
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GeorgeinRollaMO
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Posted: Sun Nov 27th, 2005 02:46 |
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Claudia,
I think that Trevor has hit it right on the head! "And that is an imponderable, I am afraid."
IMO, your sons petit-mals/migraine headaches answers the question of whether something is going on in your son's brain such as CWD bacteria, and in particuluarly, Bb bacteria causing some form of neuro-borreliosis. His avoidance of light/vitD/an increase in his 125D by intuition is enough to confirm for me that he should be tested further as I have mentioned. It would be cheap insurance against really bad consequences later in his life. I would have him so tested if he were my son... or try hard as can be to convince him of the profitability of doing so.
To my knowledge, the Bowen RIBb test is only done in Florida. But the blood can be drawn in Australia, or anywhere today, and shipped by air. It is the one really great thing about living in this day and age!!!
Good luck with your decision!
George
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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sunflower
Member in Phase 2/3
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Posted: Sun Nov 27th, 2005 03:44 |
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claudia,
another option would be to just get your son's d metabolites tested. if you have medical insurance, that would be the cheapest way to go and they would tell you if he has th1 disease or not. his 1,25d should be within normal limits (especially since he naturally avoids d foods and the sun), and if it's high you know he has some sort of cwd infection. just a thought...sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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GeorgeinRollaMO
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Posted: Sun Nov 27th, 2005 04:33 |
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Hi, All,
What Sunflower says would be true for most people. However, I know of an anomaly that makes what Sunflower said not hold water. You might call this insider information. 
The second friend that I mention above is on the MP, so I am really not giving away much personal information, except for one piece that he has not mentioned but that I think might help him if it is known by Trevor or Staff, and, might help others such as Claudia's son.
My friend is "msmminer" on the forum. You will find his Progress Report under Full Protocol. He has done a Bowen RIBb test, and was Positive at the highest dilution ratio, 128. His 125D is only 27, with a 25D of 33. It would seem that one or the other of the tests is in error. However, what he has told me in private discussion is that his Total Cholesterol is only 136, or some such low figure, and he has said that his T.C. has never been over 175 even when he was not on meds for lowering cholesterol. I believe that there is a connection between his low cholesterol and his low 125D. 125D is made from cholesterol.
If this is true, then doing just the d-metalbolites tests would be insufficient. It would have given a false picture of whether msmminer had a Th1 inflammation or not.
Trevor, msmminer is moving up to 100 mg of mino very shortly, and has not herxed yet, even though he is on the Full Protocol! Any ideas of why?
George
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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jcwat101
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Posted: Sun Nov 27th, 2005 16:44 |
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George,
I think my dad’s experience in Phase One might be of interest in your friend’s case where he isn’t herxing noticeably in Phase One. And it might also be of interest in general for anyone who wants to make sure they have gotten the most out of Phase One. My father had by far his strongest Herx days on the third day after the mino. In fact, his Herxes on Day 1 and 2 have been barely noticeable. I think this may be because he may have poorer kidney function due to his age (82) and perhaps his disease (sarcoidosis), although his kidney function tests are not out of the normal range using the usual routine blood tests. The Physician’s Desk Reference gives the average half life of mino for the healthy person as 17 hours, but it can go up to 24 hours even for the healthy person and can exceed 60 hours for those with poor kidney function.
As we know from the FAQs, the Herx is higher as the mino dose decays to low levels. If he had only dosed every other day, he might have missed killing the bacteria that were affected more at the lower doses of mino. Due to his kidney function being lower, it may take an extra day (and perhaps even longer for a very few people), for the mino level to decline to that optimal level for killing.
This makes me think that some people (especially with poorer kidney function, which they may be unaware of), who only stick to every other day, may speed through Phase One without really getting to all the minocycline-susceptible bacteria. Then when the speed with which they get through Phase One makes them think they can speed through Phase Two as well. So, they may be overconfident from this speed in Phase One and it may lead them to focus on raising doses quickly in Phase Two. And the fact that they may not have killed the bacteria effectively enough (through not reaching the low doses of minocycline in Phase One), will make any increased speed in Phase Two all the more problematic and possibly lead to intolerable herxing.
So, my thought would be for people who don’t have a clear pattern of herxing that clearly disappears a few hours before the 48 hour mark, it might be a good idea to do at least a week at each dose where they can try a 3 day cycle, before moving up to the next dose. They might even try one 4 day cycle just to be sure they don’t Herx then as well.
And they should notice whether their Herx may change in the later part of the cycle and remember that fatigue or depression may be a Herx. The 3 day cycle might even be a good thing to try now and then for others as well, to make certain whether or not there might be a little more Herx left or a different type of Herx at a given dose. If there is no Herx, then they get to feel what it is like to not have any Herx and can enjoy the progress they have made.
In your friend’s case, since he has already gotten up to 100 mg, my thought would be he might go back to 25 mg and try a 3 or 4 day cycle once or twice and then do the same thing for the 50 mg and 75 mg. If he starts Herxing on the third day at the 25 mg dose, he could stay at that dose doing 3 day cycles until he no longer Herxed. And then he could do the same thing for the 50 mg and 75 mg doses.
I think sometimes people forget that the purpose is not to get to the highest dose the fastest. Rather, the purpose is to get the most effective Herxing at a tolerable level at the lowest dose of antibiotics that this occurs within the MP guidelines.
I spent 2 1/2 months before I got above 50 mg in Phase One and got a lot of effective Herxing done. The total time I spent in Phase One was 4 ½ months. For some people, it is helpful to stay in Phase One longer. It is likely to make Phase Two easier if you have quite a large total body bacterial load (which may be particularly high in some long term Lyme, CFS and FM patients). I also tended to spend longer times at the lower doses in Phase Two and I have been improving at a good pace and enjoy good days between Herxes (and in fact my Herx days aren’t usually all that bad either).
Of course, another reason for lack of Herx might be too high a D level and noncompliance with light and D restrictions. But this doesn’t seem too likely in your friend’s case, since his D results were not too high (assuming the lab was accurate). By the way, my dad’s D levels were average too.
So, I hope that helps. I think this is all considered acceptable and within the MP guidelines and I’m sure if it isn’t, someone will correct me.
Joyce Waterhouse, Ph.D.
see FAQ I'm eager to get well. How can I speed up my progress on the MP?
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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Posted: Sun Nov 27th, 2005 18:34 |
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To all,
Joyce has offered an acceptable option for the doses and scheduling of minocycline in phase one. While our guideline says that phase one takes approximately three months and that it isn't a good idea to stay in phase one for too long, the timetable is still flexible.
Joyce's suggestions may actually speed up someone's progress in phase one if the delayed 3 day schedule allows the mino to decay to the necessary low level to provide better bacterial killing.
The goal is tolerable Herxing and any Herx symptom evidences bacterial kill. It's also very important to recognize all symptoms that may be due to the Herxheimer reaction. Please see:
Herx… What is it?
How long does the MP take?
Thanks, Joyce, for explaining it so well.
Best,
Meg
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Aunt Diana
Moderator
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Posted: Wed Nov 30th, 2005 15:04 |
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Hi Claudia,
For what it's worth, In answer to your question about penicillin....way back in 1987, I was having a difficult time getting anyone to believe me that I had Lyme disease. My "famous" doctor , the infectious disease doctor, at a very renowned teaching hospital in Boston actually said to me at the time...Diana, we are seeing 45 patients a week with symptoms like yours who all think they have Lyme Disease, but they don't.....when I asked him what they did have he simply shrugged. He had no idea, but he was certain that it was not Lyme disease. After all, in his words, Lyme disease he said with disdain, was going to be "the disease of the 90s" . That was the beginning of my enlightenment.
Meanwhile, he finally conceded to treat me because by now my heart had become involved and he was getting scared. He put me on 1,000,000units of penicillin a day (IV) which, I might add, was a miserable experience and had no effect whatever on the illness.
I think this should help answer your question.
It can't hurt to have your son tested and if he has this illness to take care of it while he is still young and before it takes more of a toll. A therapeutic probe may be an even better answer since the tests can also be wrong.
Good luck
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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GeorgeinRollaMO
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Posted: Thu Dec 1st, 2005 02:46 |
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Claudia, and All,
Aunt Diana said, "A therapeutic probe may be an even better answer since the tests can also be wrong."
I repeat, that my friend, msmminer, is moving up to 100 mg of mino (may have by now) and has NOT herxed, yet, even though his Bowen RIBb test result said that he was POSITIVE for Bb at the highest dilution ratio. See my posting above in this discussion.
Would you buy the proposition that both a test and a probe might be in order to cover those cases that may be an anomaly that causes a Negative result in one or the other, probe or test (Bowen q-RIBb)? I readily admit that a test that looks for antibodies, such as the Western blot test runs a high risk of being in error, and an ELISA, even more. The Bowen test has been shown to be 99.XX% accurate, based upon 360-some different samples, by Dr. Lida Mattman, Phd, microbiologist 1998 nominee for the Nobel Prize in Medicine, for the CWD bacteria, Bb, a known cause of Th1 inflammation, found in both borreliosis and sarcoidosis.
I would hate to hear that your son, at a later age, developed the Th1 inflammation when it could have been discovered and "cured" earlier in his life. The disease will only develop into worse symptoms by waiting! IMO!!!  My Th1 inflammation developed symptoms that has required three spine operations, one which has given me a partially fused neck. No fun!!!  The Th1 inflammation caused the dysregulation of my 125D hormone to a high level, which caused resorption... the pulling of calcium from my bones. IMO, when the resorption was at a particular critical level, the calcium was constantly removed and redeposited causing the "bone spurs" of my problems, what my docs called "osteoarthritis". I also have osteopenia/osteoporous. Both "osteo's" are diseases that are a long time in the making...and, thought of as "old folks' diseases". I now see that my Th1 inflammation started as far back as Spring 1958...forty-two years before my original thinking...to when I had not many more years than your son, now. I was only 23 years young! I wish that I had known the information then. I sure would have taken tests. and done what was necessary. to prevent my problems of my later "youth". When I finish the MP, and get rid of ALL of the CWD bacteria that is affecting my bodily processes, I look forward to living to the age of 120 to 140 years. Then, I will say that I am "old". I have a few more things to accomplish on my to-do list!
George
Last edited on Thu Dec 1st, 2005 03:24 by GeorgeinRollaMO
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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debbie
Member in Phase 2/3
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Posted: Fri Jan 20th, 2006 21:12 |
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there is a new test to test for lyme it is cd 57. done by labcorp. Lb is the only bacteria to lower this subset of the natural kiler cell. just like the t-cell count of hiv pts. look at ilads.org, articles, dr burrascano sept 2005 page 8
debbie phase 3
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deb.premp.3/05.pcrlyme+.d125-71.d25-31.mp4/16/05
benicar,celexa.4/23mino.5/5quer5/30 z+m,lithium
6/29d125-41,d25-26,11/05modph2,12/05125-29,25-30
1/06 ph3,4/06 125-35,25-19;8/06d25-18
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wrotek
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Posted: Fri Jan 20th, 2006 21:58 |
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Hi Claudia, i am night person too. Sometimes i used to stay playing computer all night and go sleep at 6am and wake up 6pm. Sugar and caffeine gives me more energy to be active in the morning but i quite sugar cause it is main food that spirochete eats and now i am trying give up caffeine too, but i am afraid that i will be totally tired after it and go sleep all night and all day like i used too also.
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Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 homebound in low lux NoIRs 25D<7 Oct06
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GeorgeinRollaMO
Member in Phase 3
| Joined: | Tue Aug 10th, 2004 |
| Location: | Rolla, Missouri USA |
| Posts: | 489 |
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Posted: Sat Jan 21st, 2006 03:27 |
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Debbie,
I looked up the CD-57 test per your suggestion. Thank you for alerting me to this!!!
"Instead, it remains low until the LB infection is controlled, and then it will jump.", and the last sentence, "If the CD-57 count is not in the normal range when a course of antibiotics is ended, then a relapse will almost certainly occur." makes me cautious about this test.
I suspect that this test does not really show much about the Th1 inflammation caused L-forms (cyst and coccoid) of the bacteria as a factor.
Dr. B sure seems to think that the spirochete is the only factor in Lyme borreliosis if you read his Guidelines. IMO, and experience, the spirochete is a factor.
However, the Th1 inflammation caused by L-forms living in the macrophages is definitely a big factor, in my experience, for a whole set of symptoms, and the reason for relapsing.
I see this test leaving one really open to NOT knowing whether one is "cured".
Dark Vader (aka, George)
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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Tobi
Member
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Posted: Thu Jan 26th, 2006 03:58 |
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George,
Another interesting thing about these CD 57 cells is that "they are down-regulated by so-called TH1 cytokines (such as IL-2, IFN gamma, TNF alpha)" - Dr. Ray Stricker - York 2004 LDA Conference
So, (I'm probably about to put my foot in my mouth) could depressed CD 57 cells possibly be used in the diagnosis of Th1 disease?
Tobi
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CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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Dr Trevor Marshall
Research Team
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Posted: Thu Jan 26th, 2006 04:06 |
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Tobi,
I think Ray hopes they can That was the rationale for his study, I believe.
I think the problem he has is to explain this to the world at large, most of whom do not even understand that antibiotics are not all the same. So it is not easy to explain exactly what a CD57 cell is, or maybe even what a cell-type is
For example, I had a lengthy discussion with the person at NIH who is responsible for giving grants out in Sarcoidosis research. He had seized onto one thing from our recent paper "if our simulations are confirmed by experiment." Out of the entire paper, that was all he retained, apparently. Such is the state of intellect in "the world at large."
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Tobi
Member
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Posted: Thu Jan 26th, 2006 06:20 |
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Trevor,
This must be unbearably frustrating for you.
If I for example had this test done and the reading was low, would you say that this in some way confirmed a diagnosis of Th1, which I know is not a simple diagnosis to make, based on one single test or observation, but would it give useful information in this regard, in your opinion? I stlll struggle , probably unnecessarily, with "do I really have Th1 disease?" given my low D scores, lack of light sensitivity, lack of relief from Benicar.
Tobi
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CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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hrts4me
Member in Phase 2/3
| Joined: | Sun Oct 17th, 2004 |
| Location: | Texas USA |
| Posts: | 590 |
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Posted: Thu Jan 26th, 2006 06:56 |
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My husband, two of my four children, my mother in law, father in law, myself and one dog all have chronic borreliosis (lyme) disease, late stage. My grandson who resides on the same ranch in which we were all infected developed the classic EM rash a few months ago, and was successfully treated. So in all we have 4 generations of "Lymies", many which have been infected for decades.
I have two sons, and three other grandchildren that are asymptomatic---we cautiously watch.
Our Lyme care provider is very much on the cutting edge----we have had CD57's run. In our cases-----I am the most disabled---on disability, and yet my CD57 is not nearly as poor as other patients I have conversed with or my own family members. I would not use this as a diagnostic test, personally at this time. Perhaps in some it can be used to monitor treatment progress.
We chose, due to having to work with other specialists to run Igenex IgG and IgM Western Blots, after "priming" with abx to stir things up....we are all CDC positive. Had this not occurred, as I am aware that false negatives do occur (especially with inferior labs and not priming) we certainly would have gone with Bowen. Our hanging point though was that other physicians and specialists with whom we must deal----are accustomed and more inclined to take a positive Western Blot at face value.
BW
Hrts
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LYME COPD Arterioscl Seiz FM CFS Hypertens NASH HiChol/ 4.2cmKidneyMass&Stones HyperCaPhUria Angina Arryth SOB RadNeurop BiPolarI| 1/05 25D-14 1,25D-13 2/07 25-D14| Nitro Verapamil Hydrocodone Baclofen Dicyclomine promethazine clonazepam
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