chlamydia/micoplasma pneumoniae

[laurawm]

Hi everyone,

I wanted to post my recent lab results. All Lyme testing this go round was negative – Western Blot and CD57. I am so confused. Guess I’ll test again at some point, but right now I don’t know that it makes a huge difference in my treatment as I am having to go very slow right now. Tested co-infections babesia and bartonella were negative.

But… my antibody titer for chlamydia pneumoniae was 1:256 where the reference range for normal is 1:16 or below. Yikes. This was IgG – IgM results were within range – my doctor said it did not matter that I was normal for IgM, the IgG results were enough to show that this is an infection my body has been fighting hard. I still wonder why it wouldn’t be elevated for IgM – perhaps once in the tissues the body is no longer making IgM antibodies?

My mycoplasma pneumoniae IgG antibodies were 143 where 0-99 is the normal reference range. IgM was not tested. Again my doctor said this was enough of a result to show that I have been fighting mycoplasma.

It’s good to have these results but a bit overwhelming and confusing. I’m in less than optimal shape right now and she has cut my meds back to 50mg minocin 3x week and 100mg plaquenil everyday. I am also going to try something to help my continually low testing thyroid. She also said it would be okay to do 5mg cortef (bioidentical cortisol) every other day to get my inflammation down. Not sure if I will do this or not. She did remind me that we are in a process of years to recovery, not months, so I need to look at the big picture and realize how important it is for my treatment to get my inflammation down so the ABX can work.

My platelets are high which puts me at risk for heart attack/stroke. My sed rate is 40 (0-32 reference) and CRP is 18.5 (0-3 reference range). My blood plasma is low out of the reference range.

Hope this is helpful for some in showing there are labs to support the ABX theory/protocol.

I’m scared right now, but I just can’t give up as I know that what is going on with me is infectious in nature. I worry about how much my joints and my psyche can handle, but at least I finally have a doctor who is 100% in agreement with the ABX protocol and knows how to help me figure out my doses etc..

Thanks all,
Laura

[Woods1977]

Hi Laura,

I also got back some “interesting” labs that have left me scratching my head… I began AP therapy in July 2012… Was doing really well, then suddenly got worse and I’m feeling like crap with more joints affected than before treatment started. Here’s a quick run down of my results:

Mycoplasmas are higher than they were before treatment began… (about 20 points higher)
IgG is lower- In July it was 1:512- in October it tested 1:256 ***(H) How funny our chlamydia pneumoniae is the same…. !
It appears that my IgM results are all normal right now…
My C-Reactive Protien continues to hover within a “normal” range
Rheumatoid factor has increased
Interestingly, my ANA is now negative- the last time I was tested it was 1:160 Homogeneous *** Although I’d rather have a negative ANA, I’ve learned this really isn’t significant as it can change on a regular basis.

Anyway, like you I understand your fustration… I guess we should be lucky to have doctors that believe in AP thearpy… but it’s still scary all the same. What if I’m one of those people it doesn’t work for… 😥 Anyway, I just wanted to respond because your not alone. If it’s of any help, there’s a great website for any of us having a hard time understanding labs- it’s called http://labtestsonline.org/understanding/ it’s been a GREAT resource for me and helping me to better understand my labs… I feel more educated when I talk to my doctor and ask better questions as a result. I’m rambling on and on now… Anyway, best of luck to you Laura and keep all of us posted on your progress!

Michelle

[laurawm]

Hi Michelle,

I’m slowly learning how to understand my labs, but I still get confused about certain points and have gotten so many mixed results for Lyme testing that I am completely without understanding as to whether or not I actually have/had Lyme. Oh well, I’ve got plenty of other things it appears so I am not going to keep obsessing over it, though I likely will do some more testing down the road.

I wonder if your antibody number went up after beginning ABX because it kicked your immune system into high gear and started producing more antibodies and once the infection begins to clear, the antibody number will slowly go down as well? Just my best co-patient guess. 🙂

Thanks for the reply – it’s always encouraging to hear from other people going through similar struggles. I hope you continue to feel better and my only advice right now is don’t do what I did and try to go off ABX for alternate more “advanced” integrative therapies – this was a HUGE mistake in my case! I lost all the ground I had made and then some and now I am virtually starting over from a much sicker starting point. 🙁

All the best,
Laura

[Woods1977]

Hi Laura!

No, I certainly don

[laurawm]

Hi Michelle,

Sorry to take so long to respond but I am just so sick many days now and I have two small children that keep me moving whether I can move or not!

I have a crazy history over the past year and was seeing an integrative doc who did lots of food/mineral/other testing. I do have a significant dairy sensitivity as well as wheat and yeast. Eating generally causes me inflammation as I am sure I have some level of leaky gut and all carbs seem to contribute to bacteria growth, but I do the best I can being dairy and gluten free. Most of the time I also stay away from beef and pork as well.

When I mentioned your antibody levels, I did not mean your ANA but rather the antibody levels tested for mycoplasma and chlamydia pnuemoniae – this is at least how I was tested – by antibody level in order to assess infection exposure. So, I was thinking that if this was how your test was done, it would make sense that your antibodies would go up at the beginning of treatment as your immune system kicks into high gear to kill off the bacteria that antibiotics disable in your system. As I said before, I’m not sure, just thinking.

I hope you are doing well. I’m having a few better days now so that helps me feel hopeful. I know this is the right treatment. I am just weary.

Best,
Laura

[Maz]

@laurawm wrote:

But… my antibody titer for chlamydia pneumoniae was 1:256 where the reference range for normal is 1:16 or below. Yikes. This was IgG – IgM results were within range – my doctor said it did not matter that I was normal for IgM, the IgG results were enough to show that this is an infection my body has been fighting hard. I still wonder why it wouldn’t be elevated for IgM – perhaps once in the tissues the body is no longer making IgM antibodies?

My platelets are high which puts me at risk for heart attack/stroke. My sed rate is 40 (0-32 reference) and CRP is 18.5 (0-3 reference range). My blood plasma is low out of the reference range.

Laura, I have been away a lot recently and away again till Sunday, but caught your post as I was scanning through the front page and thought you might be very interested in some info that was presented at the ILADs conference in Boston last weekend by a German guy – considered the Euro Lyme Guru over there = Dr. Armin Schwarzbach, MD, PhD :

http://www.ilads.org/media/boston-videos/videos_schwarzbach.php

His slide presentation should be posted in full on the ILADs website at some stage, but I would suggest signing up to be reminded to watch the presentations in streaming format on Dec 1st and 2nd here:

http://ilads.org/ilads_media/boston-live-streaming/

This German doctor was the second presenter during the Sunday morning plenary sessions:

http://www.ilads.org/lyme_programs/boston/program/program_sunday.php

Dr. Schwarzbach reiterated, over and over, as he presented and during question time that getting IgA testing for Chlamydia pneumoniae was more reflective of disease state and more accurate. This makes sense as IgA relates to mucosal immunity. It constitutes about 75% of immunoglobulin in the body and is mostly produced in mucosal linings of the body, but also secreted into the intestinal lumen (IgA pathology is also related to celiac disease, as a result).

Has your new LLPA suggested that you take systemic enzymes to help thin your blood? Not only do systemic enzymes (taken on an empty stomach otherwise they act as digestive enzymes) are believed to lower CRP and SED rates, as well as to help thin the blood.

This is fantastic that you’re finally getting some answers re: infectious causes. The take-away message of Dr. Schwarzbach is that these infections are pleomorphic and work in synergy with one another to divert immune function (overactive, yet suppressed). Suppressed antibody tests can result, so that a true picture is not really possible. As such, tests can only really be used as “clues.”

I hope this helps in some way in your discussions with your LLPA. 🙂

[laurawm]

Thanks Maz, for the info and links – I am going to talk to my doctor about testing for IgA – she’s very open (so great) so I believe she’ll say let’s test it.

I started systemic enzymes last night and am a mess today (all my bodily tissues feel enflamed and in pain – not just joints) – is it possible that they could contribute to a herx? There are other possibilities, of course, for why I’m in such a state today, but it started shortly after taking two enzyme tablets before dinner last night. I did eat cow beef and crushed tomatoes in that meal for the first time in a couple of weeks, but night before last I had lamb with no exceptional reaction, so it’s hard to believe it could be this. Other possibility is taking 5mg cortef (equals 1-1.5 mg prednisone) yesterday morning and could be having a reaction to coming down off of this (if so, I am NEVER taking it again – as it is I’m pretty sure I will not take it again as it made me very hungry and emotional in a strange uncomfortable way).

Thanks again, Maz.

Laura

[cavalier]

Laura & Maz –

Laura -I hope u dont mind my perspective on this is that you finally are getting the chance to make real progress in that you know now what you are battling for sure – that is 1/2 of the battle right there sure you dont feel better just yet but you are now on your road to wellness finally! I hope that makes sense. Had you not known this you would continue to get worse and would still have those clot risk markers but not equipped with the right means to get them down – I think it’s positive albiet none of us wants a illness but now you can target these so much better.

Did you ever send your blood yet to the UK for the doc to analyze? If so have you heard anything yet? Be interesting as to what that doc finds if it will specify this too? I saw my LLMD yesterday he said the doc over in the UK is considered like a Einstein and said he would encourage me if i could afford it to spend the 250 to see what he comes up with. I mentioned what you brought up if Lyme is there does that need to be in remission 1st – he said he does not know as he does not know enuf about peptides he wondered if Dr Wilson who you saw in Ashville would know the answer to that as he knows a bit about Lyme and knows peptides.

We are running a CD57 test and blood was sent for that yesterday – should get it back next Friday for results. I just question why not thru Igenex instead thru AEL – maybe due to him wanting insur. to pay? I hope AEL labs is accurate for this. Dr. C. is going to order me a PIC line knowing it can increase clot risk by 5% due to my clot markers being raised I am to take 2 Natto I take one now but up it and take 2 Bolouke as well. He is sending my case to Home Solutions I think it is national company for the IV AP he says they do a great job in somehow getting insur. to pay. He says my being CDC positive helps in them building my case.

I forgot to ask him as he mentioned mycoplasmas as a poss. coinfection for me does not like my WBC has dropped lower yet – I said i was tested for that in march he then thought probably not but for some reason Cpn was not tested by Dr S. even though he said he was going too I would like to have that one checked. Dr C. asked me to run my WBC by the hematologist for his thoughts on this. So I would like to get the Cpn test to be sure as i have had pneumonia before in my lungs. I hope some of this maybe helpful to you for the clot risk – to ask your doc about.

Maz – Dr C. Tunica Ms was at the same convention you were and he talked to the same German doc u mentioned he said he is sharp – he said they talked for 2 hr’s direct between the 2 of them both missing 2 hr’s of the conference. He said much debate was talked in the conference of the chicken & egg thing when it comes to autoimmune and lyme and which came 1st – i said I felt lyme made the body so out of whack he said many share that.

He is giving me for free something called SLO which is made for UCTD/ MCTD/ SD for helping to slow or stop the stiffening in my arteries for my lungs & small bowel developed by a doc. that gave it to Dr C. for his patients as needed. It’s at his home still so i need to pick it up at his office after calling 1st next week that it’s there and remind them if not there yet for him to bring it in. . He is adding in Cytomel slowly to my armour thyroid will measure that in a month, keeping up on the adrenal support of course so i dont burn out. And wants me to take Actigall a prescription to protect the gallbladder while on IV AP – not sure which one AP he will start with for me he talked of a few i told him I would leave that up to him but wanted to see where i am at on the CD57 he then said he now wishes we had run one back in June with my lyme test so we would have a bar – but he felt knowing i was positive for 6 bands was enuf i suspect mine will still be showing but I dont know much about this test how accurate it is or if who does it matters. Dr C. talked bout Fry labs was there & he said the conference was really great. He also gave me some Dr’s Modal i think cant read his writing well drops for he & his mentor doc both showed that this is VERY helpful in reducing or remission for Lyme – 2 different vials – CM4 & M2. He feels i should combine with AP. Also wants me on Transfer Factor Lyme by Research Nut. 1st words he said was my partial small bowel obstruction could likely be from my Lyme with the stomach and also for my heart. He is calling for the home health service on Monday so I will find out from them which IV he is choosing for me 1st. He was very supportive and I feel glad to have him. He looked at my tongue as he asked me about tremors i said my eyes have been doing this alot lately – he said my tongue qivers – my husband told me he’s noticed that too I had never noticed it. I guess the tongue sometimes does this he feels this has gone neuro.

Sorry I should split this out – dont want to hijack the thread just some of this is pertainent to Laura for clots to look into. Short on time.
Best – Jill Lyme

[laurawm]

Hey Jill,

Thanks for your thoughts. Yes, Dr. W holds the UK analysis in high regard as well. They said I do not have Lyme but do have inflammation on brain cell receptors that has triggered an autoimmune antibody response that is attacking my joints. Hmm… sounds fishily like infection to me, though Dr. W calls it “antigenic memory”. They also said I would benefit from a shot that helps my body convert cholesterol into estrogen. Thing is, my estrogen levels are great in my labs – it’s my thyroid that keeps testing low. I am also of the belief at this point that there is a strong possibility that peptide shots could be turning off the very antibodies that our bodies need to clear out the specific infections we are dealing with. I do not plan on continuing, but I am glad I had the analysis done as it helps me stay realistic about the fact that I likely have neuro involvement in whatever all I have. I strongly believe that this all began about 15 years ago with me with a bad illness and beginning of a chronic cough and transient knee pain that I explained away this entire time. It began in my right knee, and it is my right knee that is the worst off now (baker’s cyst, near bursting swelling etc.). Regardless, I am now seeing a new doc whom I really like and is finally getting the right labs done and actually treats from an infectious standpoint. I wish I had of started with her, but at least I have her now. She had/has Lyme and is incredibly compassionate and available for questions, so I feel I am in good hands right now.

I hope you make some fast progress. I am in the midst of crazy herxing and it’s hard, but I know it will get better eventually.

Wish we all lived close and could have some hot tea together on these chilly fall days. 🙂
Laura

[cavalier]

Sending warm healing hugs to you Laura – Jill Lyme

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