I am very sick and think maybe I have a bacterial infection baseline adding to a lot of other things

I am not on CAPs, but have CNSi/autoimmune like mystery symtoms that I attribute to some bacterial or viral infection I may have gotten in my childhood. I grew up in an Eastern European country with most probably lots of chemical and pesticide exposure. I also had 10+ amalgam fillings starting at the age of 9 and until about 25, at which point they were incorrecty removed (no amalgam vapor protection).

I started getting debilitatingly sore throat in my ealy teens, was treated with probably 50-100 times with antibioticsi (erythromycin mostly) had a botched tonsillectomy at 12. Subsequently, I started to loose my ability to read books in a sense that I would read a paragraph and then find myself on page 50 with no recollection or comprehension of what I had read (have read in literature that this is a symptom shared by neuroi lyme folks). My prolific memorization abilities turned in to an inability to recall even 4 numbers in a row.  Nowadays I can read at most 1 page on the same subject, have directional issues - confuse right and left sometimes - can't connect high level views of different regions in my mind.  Had a brain MRI 3 years ago - nothing to report.

I am COMT+- (V158M and H62H), VDR Taq Tt and VDR Fok FF, MTHFR +- (C677T and A1298C), MTRR+- (H595Y and K350A), BHMT +- (ALL), CBS+-(C699T and A360A), SHMT+- and NOS+-.

I have high c4a, low c3a, high tgf beta1(suggestive of mold exposure and confirmed with a very high ERMI in our house). I definititely have candida as suggested by two 1-year apart Metametrix GI Effects tests. GI Effects also reported endolimax nana and another parasite of unknown taxonomy.

If I don't take 10K units of vit d3, I am below 30. With it I get up to about 45.

My igenex results are:
IGENEX IGM RESULT NEGATIVE
CDC/NYS RESULT NEGATIVE
18 kDa.-
**23-25 kDa. -
28 kDa.-
30 kDa . -
**31 kDa. -
**34 kDa. -
**39 kDa. IND
**41 kDa. ++
45 kDa.-
58 kDa.-
66 kDa.-
**83-93 kDa. -

I have developed fatty liver in the last 4 years, which coencides with the timeframe of my life long symptoms of foggy brain, fatigue and diarrhea being added to with a profound ill feeling, internal tremors, significant neuropathy in hands and feet, debilitating short term memory loss (can't find words), doomy feelings, upper right quadrant abdominal pain, lump in the throat, significant gerdi (different and stronger than before).

There is no doubt I have methylation issues. Even though my serum B12 comes back normal most of the time, I believe I have intracellulari methyl and ad b12 deficiency. I just did a spectracell to confirm this (results not in yet). Vitamin Diagnostics methylation panel shows deficient glutathione and folate">i derivatives. Also low normal SAM-e.

In addition to my methylation issues, I believe I have (and have had for decades) a virus or bacteria that is causing a baseline of toxicity in my body which together with my inability to remove toxins causes extreme oxidation and organ damage.  Another theory is NO/ONOO perhaps caused by pesticide exposure in my childhood and further triggered when I reacted dramatically to NO during my wisdom teeth extraction.

Given all the tests and data that I have, how would you recommend I go about proving (or disproving) whether I have a bacterial infection or not?

Thank you very much

Personally I wouldn't bother too much about proving or disproving anything: I would just get on with treating yourself.  Start with the NACi test, information about which you can find plenty of on this site and then purchase the antibioticsi and get going................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Few things spring to mind as comments....

1.What is your MTR status ? + is an upregulation which will increase your need for B12, but MTRR + is a downregulation , so there will be less B12 available.

2. Have you looked at your genetic profile using Livewello.com ? I am getting some very critical information about B12 transport and intra-cellular metabolism, and you can also look further at Intrinsic factor genesi and Gut Genes that affect B12.

3. Have you checked your Lithium levels with a Hair Mineral Analysis ? many people who have low intracellulari B12 have low Lithium or even no Lithium. MTR/MTRR SNP's seem to predispose to this. Supplementing with Lithium Orotate BEFORE adding in B12 will bring the Li level back to a Physiological norm and Li will be able to do its job of getting B12 and Folate">i into the cells. You can order from here without a doctors order, and Dr Yasko will comment on the reslts....    http://www.holisticheal.com/hair-elements-test-kit.html

4. There was an IND on Band 39 on your IgM IGenex.   What was on your IgGi ?   Many LLMDs consider IND to be significant, because it is not a Neg..... there was something there .... a bit like being a "little bit pregnant ". If your Immunei system is shot at, you will not be producing antibodies that would show up on this test.

5. have you made any dietary changes that might give clues as to Gluten/Dairy issues ?

6. IGenex also do an IgG/IgA for Chlamydia Pneumonia...... but a very good test, as Sarah has said , is to take NACi and see if that provokes a die off.

7. Do you have a good Integrative Med doctor ?   I have heard of an excellent one in Plymouth, MA.

Hi Annelet,

I truly thank you for this information about genetic testing...but if you wouldn't mind straightening me out a bit - I went on the Livewello site and then looked up 23 and me - not sure what to order to get the most comprehensive testing re: MTFHR, etc ( oh dear this always looks like a big swear word lol ). Looks like the 23 and me is 199 cad? And don't know about the rest - there was something for 19.95 cad so that can't be much? Could you steer me please and then I will order asap!

Thank  you again,

Linda

OK Annelet, I read again - looks like I buy the 23 and me and then get livewell to send the report? Is that right and thank you, Linda

Hi Linda,

Yes, start off with getting the 23andme test. It is $199CDN, and that includes the return shipping via CanadaPost. No doctors order is needed. The test is done on a saliva sample and the results take 4-6 weeks and will be emailed to you.

Then you can run the results through a service like Livewello and get your risk SNP's for Methylation/Detox/Immunei Function etc.,  This is about $20.... or you can research other genesi that you might be wondering about, based on your personal or family history.

At the same time..... if you haven't done so already..... you might think about getting the Hair Analysis done to check your Lithium level. If you order through Yasko you do not need a doctors order.

Anne

thanks for this,

my MTR A2756G is --. I was not aware of livewello. I have done genetic genie and promethease but not that one yet.

I have read about the low lithium from Cutler forums but I am so overwhelmed that it randomly did not enter my top 10 list until now.  I will pay more attention.  I have done the metamerix hair test before (0.007 lithium which is low normal, but high uranium and low iron, cobalt and chromium), but the cutler guys didn't really feel comfortable commenting too much because they are used to the DDI one.  I might take a look at the Yasko test.

I am lyme illiterate.  The only thing I know is that my reading conprehension issue is neurological and possibly implies lyme, but I was in Turkey during my childhood when it first happened and AFAIk there are no ticks there.

I was curious about the 39IND, so it actually does mean there is something? What about 41++? It makes total sense because I first discovered that my immunei system is Th2 driven 3-4 years ago and since then I have noticed that I have something akin to a cytokinei storm going on (from c4a, c3a and tgf beta1)

I recently started being due diligent about gluten and immediately noticed that my decades long diarrhea goes away or significantly reduces when diligent.  Who knew - I grew up eating half a loaf of bread for breakfast...  Dairy is tough.  It's my next challenge but I suspect there might be something there too because I have despised milk and yogurt all my life...  I love cheese though and have Half and half with coffee.

Honestly, I have struggled to find any doctor that knows more than me about methylation, B1, m folate">i, Bs, GI, heavy metals and mold.  It's a very lonely place to be because I don't want this responsibility and it is too overwhelming when my life is at stake.  Would you be so kind to PM me the Plymouth docs name?

I have NOW brand NACi sitting on my shelf (together with other 100s of supplementsi).  I am not sure if I ever tried it because I am scared to further complicate matters these days and I react to certain supps, for example ALCAR and Niacin">i.  Niacin probably because I think I undermethylate and niacin further slows it down.

Where can I read about the theory behind NAC causing die off in the case of Chlamydia pn?

When you say IGGi do you mean food intolerance tests?  If so, yes, I have a comprehensive test as well as ALCAT Platinum. The igg elisa shows 3 stars for brown rice, which is AFAIK what's in all the gluten free bread that I eat.  I ahve wondered if I replaced gluten with something else that makes me feel bad...  2 stars for bakers yeast and lima beans. Then 1 star for carrots, lemons, clam,rye and brewers yeast.

Regarding methylation, IMOi, as far as my research and understanding show, the combination of my MTHFR, MTRR and CBS genesi shunt intracellulari B12 and m folate and push my CBS down the taurine path (nutreval shows very high taurine) causing a combination of low methionine (shows on nutreval), low glutathione (nutreval and vitmain diagnostics tests) and low same (vit diagnostics).

So, I think I have high oxidation, neuro issues due to B9 and B12 deficiency and finally perhaps something like lyme (and this is why I write to this forum).

Thank you so so much! 

Thanks Sarah - yeah I am not that concerned with the process of proving or disproving either - I just kind of want to figure out how to get better the quickest and safest way.  In the absense of docs being able to help (I have been to 20-30, including 3 neurologists and an infectous disease specialist at Brigham Womens  so far) I have been trying to hang in there and figure this out myself.  I am an engineer and the only way I know how to do things is by understanding and experimenting.

I am going to look in to NACi - thanks very much

Be careful with the NOW brand, as it contains Selenium and Molybdenun. With the larger doses of NACi that are required, you will be taking too much Selenium and Moly.

Try and get a brand that has JUST NAC. I use AOR brand, which I find is very good.  Others in the US may chip in with suggestions for brands.

Anne

You can buy lots of brands from Amazon on both sides of the Atlantic.  I use Source Naturals or Doctors Best or Jarrow........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Interesting; I've been using NOW brand NACi since 2005. 

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

Anne,

I did notice this but thanks for making sure I know about it.

I have looked and looked, but perhaps due to my neuroi symptoms, I can't seem to find anything to read on the theory of what the NACi experiment for CPNi is.  I read about the bacteria exploding before they enter the cell or something like that, but not more than that.

Is the idea that if I take NAC and feel better this is a strong indication that I may have CPn?

Any links on what to read about this?

Thanks

If you take NACi and feel flu-like symptoms, it's a good indicator you have CPNi.  We call it 'NAC flu'.  NAC breaks disulfide bonds.  Dr. Wheldon explains the rationale for difference adjuncts and supplementsi here: http://www.davidwheldon.co.uk/ms-treatment1.html<

It applies across the board, whether you have MS or any other autoimmune disease associated with CPN.

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

Source Naturals are a good brand use that brand myself.. They also do turmeric with black pepper added in the right dose to let the body absorb it...

The Greatest Risk of all is Not taking the Risk...

Thank you Anne - that is so very clear - just what I needed to move forward! Linda

Sorry for prolonging this - two quick questions:

is the jarrow sustained release ok or to follow the protocol properly should I choose naci that is not sustained release?

nac is a supplement that is mentioned a lot in regards to reacting to sulphur compounds.  So if I react how do I know it is cpni flu vs a reaction to sulphur? I read about this a lot on the cutler forums.

Are you allergic to sulphur?

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

I am not allergic but I have a cbs snp which means I can, in theory, be sulphur intolerant.  Also, I think a lot of the Mercury toxic folks have sulphur intolerance.

I guess I'll just give it a try.

Dunno about 1316, but I am allergic to sulpha - no problem tolerating MSM though. Can't have eggs....

1316, How are you with onions, garlic and eggs? Don't worry so much.............Sarah 

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

This is a good point - I can eat lots of eggs.  And I do worry - so you pegged me well :)

I just dug out my IGGi (sorry about the misunderstanding of IGG elisa for food intolerances):

IGENEX-IGG-RESULT NEGATIVE
CDC/NYS-RESULT NEGATIVE
18 kDa -
**2325 kDa -
28 kDa -
30 kDa -
"31 kDa -
**31 kDa -
**39 kDa -
**41 kDa IND
45 kDa -
58 kDa -
66 kDa -
**8393 kDa -

So band 41 is involved again.

Just as a reminder here is my IgM:

IGENEX 1GM RESULT NEGATIVE
CDC/NYS RESULT NEGATIVE
18 kDa. -
**23_25 kDa. -
28 kDa. -
30 kDa. -
**31 kDa. -
**34 kDa. -
**39 kDa. IND
**41 kDa. ++
45 kDa. -
58 kDa. -
66 kDa. -
**83_93 kDa. -

So, does band 39 and 41 just imply lyme and rule out co-infectionsi or does it just say lyme and the co-infections are TBD with other tests?

Thanks very much

No idea: I have never had that sort of test: I just go by what I can eat and what I can't.............Sarah 

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Since this site is about Cpni<

I sent you a private 2 messages about the challenges of LYME testing and need for a diagnosis based on clinical symptoms, especially when tests are IND or negative.

Hi,

You did not say if you had CD57 test done in your message, I am assuming you did not.

I've had the exact same results as you from IGeneX so, curious and curiouser me perservered in wanting to know what is going on so I went through Infectolab in Germany to test for chronic LYME, CD57 and Chlamydia pneumoniae. I opted for all the recommended tests for these two pathogens, including LLT tests. My results were positive. 

If you want more information check out these threads or contact me via personal message:

http://www.cpnhelp.org/cpn_testing_1<

http://www.cpnhelp.org/new_here_3<

http://www.cpnhelp.org/getting_worse_my_c_pneumo<

The last one shows a copy of results from IGeneX

I hope this helps.

Mia

IND means indeterminate - they are not 100% sure if you have LYME

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