posted
She is 17 and it was 29 a year ago, then 25, 6 months ago, now 13. She has been on abx the whole time, lots of different combos, flagyl, rifampin, doxy, plaguenil, biaxin for 15 months now and very compliant.
We are thinking about going over to A bart alone or with a Babs, and being done with abx for a while to see if this shows more improvement.
Looking for opinions out there regarding the immune supportive aspects of BWF and if its a good idea to switch it up now given such a low cd 57 and still almost all the symptoms she ever had. Mostly neuro, and seeing a LL neurologist in MA for this.
FYI no tick seen, chronic lyme after 2+ years of symptoms and not only no treatment (but steroids for her "poison ivy").
thank you
Posts: 42 | From Northeastern US | Registered: May 2010
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posted
she had a rash back in Sept 08 that the dermatologist thought was poison ivy and treated with prednisone for 5 weeks. It was the beginning of all the flu like truck hit me feelings for her.
Posts: 42 | From Northeastern US | Registered: May 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I don't know much about CD57 results...I just know mine was 30 after 3 years of abx and then a 7 month break.
But then..I don't know what it was before then because it wasn't tested. I'v been told not to rely much on them.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
Mine started off at 30 before treatment and is now 19 after 8 months of abx...
My LLMD says it is normal.
Also, the more I research the more I wonder how accurate this really is. I definitely think it is great to have high numbers, but not sure how high associates with progress.
Question.. How many people with high CD 57 have definite positive Lyme through Igenex?
-------------------- IgM- 31,34,39,83-93 IND IgM- 41+
IgG- 31,34,39,83-93 IND IgG- 41++ Posts: 610 | From Lymeville | Registered: Nov 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
My son was a 10 on the CD57, I tried not to freak out too much... but he was very sick and weak at the time too.
He also was put on prednisone for what is in his record as "normal gout"
He also felt like he had been hit by a truck throughout abx treatment.
He is 80% better most days some days are darn near 100%.
We found out our home was full of toxic mold that we could not see or smell. It was behind the walls of the tub and the only way we found it was through air testing.
We are mostly working on detoxing and helping his liver to get rid of the toxins. He is still taking supplements for KPU and taking BAR-1 Also taking antifungals... but he herxes terrible on these, so going slow.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
There was one study by a LLMD that showed a correlation between lyme and low cd57.
Since that time, the various LLMDs have different opinions.
Some LLMDs say that if your score is lower than 60 and you stop treatment, you will relapse.
Some LLMDs say that low scores combined with feeling crummy show your immune system is comprimised, and that the lyme is still winning the battle.
Some LLMDs say that if your sore is above 200 and you are really sick, it is likely co infections that are your main problem.
Some LLMDs say they see no relationship and don't bother with the test.
Some LLMDs see a pattern of cd 57 in some patients, but not others.
Personally, I think you need to do this test every 6 weeks for a year to establish what your own patterns are.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
anyone have an opinion about switching over to byron White drops at this point?
Posts: 42 | From Northeastern US | Registered: May 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I wouldn't give up on abx and switch to herbs alone mainly because of a lower CD57!
It sounds like she may need IV abx, if she is mainly neuro. Talk to your LLMD about all of this. It can take a long time to even start to get better, unfortunately (not for everyone, but it's quite common.
Having had the prednisone for 5 weeks surely complicates things further, too.
Posts: 3792 | From around | Registered: Mar 2008
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quote:lizzysmom: she had a rash back in Sept 08 that the dermatologist thought was poison ivy and treated with prednisone for 5 weeks. It was the beginning of all the flu like truck hit me feelings for her.
Hi Lizzysmom, as you probably know, the prednisone lowers the immunereaction tremendously. This can be pleasant in the case of all sorts of symptoms, but at the same time leaves the body almost defenseless against the bacteria, virusses and other stuff you don't want. No wonder the truck hit.
Try concentrate on the immunefunction, this will determine succes. Do read the item on selenium and have seleniumlevels checked. http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/109275 If seleniumlevel is low immunereactions will be inadequate or wrong.
All the best.
-------------------- "They that are whole have no need for the physician, but they that are sick: I came not to call the righteous but sinners to repentance"(Mark 2.17) Posts: 149 | From Amsterdam | Registered: Jul 2011
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quote: momlyme: We are mostly working on detoxing and helping his liver to get rid of the toxins. He is still taking supplements for KPU and taking BAR-1 Also taking antifungals... but he herxes terrible on these, so going slow.
Hi Momlyme, If herxes are really bad this means detoxing is not good. Could it be lack of glutathion? Have you had the blood checked on these items, like minerals etc. Do you know where selenium was at? Selenium is the main substance in glutathion. Selenium is necessary for both fighting the infection as well as taking care of toxins that are produced.
Good luck.
-------------------- "They that are whole have no need for the physician, but they that are sick: I came not to call the righteous but sinners to repentance"(Mark 2.17) Posts: 149 | From Amsterdam | Registered: Jul 2011
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
The BW herbs are great. Why not add them to the abx? They can work well together. I have monitored my CD57 quite a lot, on and off abx a couple times, and I have seen that the number goes down a bit just from being on abx, although as treatment progresses successfully, the number can still increase more substantially than that slight depression. Then it will increase again slightly just from coming off abx.
I'm not sure I'd read too much into that level of change of just 12 points. I would try to conclude whether abx is hurting from another method, and wouldn't conclude a drop in 12 has caused it. I would look more at the number just lagging very low and think the treatment so far has not been very good--perhaps just very sick at the start, or perhaps ineffective treatment and needing something different or more.
Posts: 1927 | From se usa | Registered: Mar 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
quote:Originally posted by Leonardjio:
quote: momlyme: We are mostly working on detoxing and helping his liver to get rid of the toxins. He is still taking supplements for KPU and taking BAR-1 Also taking antifungals... but he herxes terrible on these, so going slow.
Hi Momlyme, If herxes are really bad this means detoxing is not good. Could it be lack of glutathion? Have you had the blood checked on these items, like minerals etc. Do you know where selenium was at? Selenium is the main substance in glutathion. Selenium is necessary for both fighting the infection as well as taking care of toxins that are produced.
Good luck.
I suspect you are right. He is glutathione deficient and deficient in many other minerals.
I wanted to have his minerals tested but New York State does not allow any of the mineral tests I have found. I will ask his new LLMD (out of state) if he can do mineral testing.
He is KPU positive and his hair test shows that he is deficient in all the essential minerals due to his heavy metals...
We do supplement trace minerals, zinc, copper, B vitamins, magnesium, calcium... and I have a glutathione too.
We are going slow with the antifungals. I think he is so fungi toxic... going slow is the only option! A liver can only handle so much at once.
I am doing everything I can to help him to detox. I just wish he were more tolerant of caster oil packs and coffee enemas. I do whatever it takes to feel better. Trying to get a 12 year old to do that is like trying to fight the wind.
He is doing soooo much better. Today, he was out riding his bike around town.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Is there a way to test for Glutathione levels? Before ogin to the expense if IV for it, or even suppositories, i would like to know if the selenium/glutathione is low.
we have an appt with the Naturo path weds and I think we might layer in the ABart along with the abx. thanks all, for the responses
Posts: 42 | From Northeastern US | Registered: May 2010
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