27 Apr 2018
Author
pennieloafer
Title

cd57 help

Body

i ordered the cd57 test myself because i couldn't get a doctor to order a lyme test.  i suffer from extreme neuromuscular pain with normal mri emg ncv.  i also have a condition called ehlers danlos syndrome.  however, i never experienced nerve pain in my life it seemed to come on very rapidly.  is it correct that any one of these pathogens would cause a low-ish cd57 test result?  would just having chronic pain lower my immune system this much? i'm atlanta and i am completely broke.  i cannot afford to spend thousands to go to a llmd.  not sure what to do.  also, is it possible to have one o

Comments

katman

17 Mar 2012 12:10 pm

So sorry about your financial situation.Some things that you could do are taking NAC and The other supplements on David Wheldon's list.  They are good for everyong.  The NAC will be very good for your liver, too.  Also, you can't eat too many vegetables.  Diet is very, very important.  If you spend much time inside, begin Vit D3 immediately.  Take at least 4000 units a day.  That is my opinion.  I take 7000 to 9000 a day, not counting what is in my multivitamin.If you are able to get Doxycycline and begin that, that will get you started.  Any antibiotics that you get your hands on, HOARD til you get any others that can be used.Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

pennieloafer

17 Mar 2012 01:18 pm

i was actually refered here by paul's perfect health diet site and i take a good amount of supplements, i have NOT tried the nac tho.  i just bought some today.  really curious if i feel anything. interestingly i found out i had a mg deficiency .5 (1.5-2.2 range) last summer.  when i took 1200 mgs i had a 3 day panic attack but my neuromuscular pain went away.  it was very strange.  my mag levels are normal now and i am still in a ton of pain. i was rx'd doxy as a teen for acne, i actually only took it for a week because i started developing tons of COLD SORES.  i told my doc this and i'm not sure if he believed me but i'm sure you guys will :)

MacKintosh

17 Mar 2012 05:30 pm

Try the NAC and see if you feel flu-ish, or like a cold is coming on.As for your cold sores with doxy, it sure sounds like the doxy was doing what it's supposed to do-KILLING something.Katman's right; eat your veggies!  (I'm bad and have terrible food habits, but I know good advice when I see it.) CoolAs for money, if you can get prescriptions, doxy, azithromycin and metronidazole are off-patent and cheap. Costco, Meijer, etc., sell many of our meds at $4 to $10./month

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

katman

17 Mar 2012 08:00 pm

Magnesium is an important mineral on our list, as is selenium - be sure to take the correct dose.  We both here take both or these every day, and the other supps on the list.  Good luck with all this - remember that there are NO dumb questions.   Another VERY important thing is acidophilus, or any other "gut bugs" of your choice.  These are an absolute must when you are on long-term abx.  Start the NAC, add the Doxy, and add others as you can. Please try to read the "Getting Started" at the top.  It will go far in explaining the reasons behind all this.Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Potato head

18 Mar 2012 10:06 am

I think i read somewhere that CD57 is only lowered with Lyme, but i'm just a beginner so not entirely confident in that.  I didnt even understand the result.  I think CD50 should be over 200 and yours appears to be a lot lower than that, if i've read it right.  So looks like you have got Lyme and if you have Lyme they do say co-infections are almost a definate.

Female UK. High EBV, CMV. In winter 12/13 waslow Lyme and Cpn-tx'ed 6mths. Sept 13 -ve lyme, +ve erlichia, bart &Yersinia, starting tx for co-infections also aspergillus

Louise

20 Mar 2012 12:56 pm

Not almost definite.   A mix of co-infections is possible.   I tested negative for the one's that could be tested and did not have the syptomotology for the one that was not tested.   Most of my virus' tested were negative as well.  I had a low EBV indicating past infection I think.  Would have to did out results to be accurate with numbers.   However the more co-infections you have weather you have Bb (lyme) the more complexity and then for some other antibacterial and perhaps eventually anti-virals could be needed.Potato,  you could treat yourself with moppers after your visit to try to improve your fatigue.   Learn more about them here.   And learn about methylation (detoxification support) you can find a lot of info easily but looking under forums, bookmarks at the bottom of the list and sorting through.Hope your appointment is satisfactory to your treatment.   Louise

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
pennieloafer

18 Mar 2012 10:33 am

is the selenium for ft3?  have you all tested positive for "euthyroid sick syndrome".  i have low ft3, higher than optimal tsh, and tried taking cytomel.  i did not go hyper on it but into a total stupor.  i had to stop taking it.  also on my iron panel my TIBC and UIBC are always out of range low which is fishy. do you guys share your lab work? or does it mostly look normal? what common infections does doxy NOT treat? i took 1500 mgs of nac yesterday, i just have some mucous.  so far i'm feeling fine. tia :)

katman

18 Mar 2012 12:10 pm

I can't help you on the levels - I can only suggest that the list of supps will help you fight this battle.  Most people are deficient in magnesium, selenium, Vit D, and most of the nutrients and vitamins on the list.And you have "sniffles"?  That is all I remember getting from NAC when I began.  One misconception is that ONE antibiotic is enough to fight this insidious bug.   It is not. Doxy and NAC are the first, then we ADD Azithromycin, and then ADD metronidazole or tinidazole, taking all three for whatever period we need.Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

katman

18 Mar 2012 09:05 pm

Be sure to drink plenty of water with it, or fruit juice.  Or eat something.  I must always do that or I get "heartburn".  It is, after all, an amino acid.  Every day I still react to NAC in the middle of the day, but very little now.Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

MacKintosh

18 Mar 2012 09:30 pm

2400mg/day is what's recommended, but you may have to build up to that over time.   You can split the dose over the day, as well.It makes me a bit nauseous every once in a while, too, so I usually take it with a meal, then it's not the only thing in my stomach.  Take lots of water with it and don't lie down for awhile.  Being prone makes it easy to create reflux with any med.  Give it time to pass through your stomach. 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

jeanneroz

21 Mar 2012 10:20 pm

Hi, Penny... a good read, that may be of help, is "Healing Lyme" by Stephen Buhner. He also has a book on "Herbal Antibiotics" These are written by a expert and give an alternative to "prescription"antibiotics along with a safe way to self-treat.  There is also a Buhner Healing Lyme Website.If your funds are limited you could start with this information....RE: " is it correct that any one of these pathogens would cause a low-ish cd57 test result?"The answer is yes.Many (most ILADS-trained) LLMDS believe CPN is a co-infection of borrelia burgdorferi (Lyme); ergo, if you have CPN you have most likely have Lyme and/or other co-infections). 

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

marlene

28 Aug 2012 06:29 am

"RE: " is it correct that any one of these pathogens would cause a low-ish cd57 test result?"The answer is yes." Sorry but I missed the clue. I did three Lyme tests in (three different) specialized Lymelabs and they always came back negative.CD57 was 70 and Cpn positive.What do you mean with "other pathogens"? Can you be more specific for my brainfog mind :)Thanks,Marlene

17 Mar 2012
pennieloafer