216 replies to this topic

[Lufega]

I wrote to Igenex and they told me they would ship the test kit down to me. I don't know why I didn't think of this before. Blame the brain fog for my brain fart. We'll see how this concludes....

[rwac]

I tested negative for h. pylori when my symptoms were at their worst (about 10 months after it started, plenty of time for antibodies to show up). I'm fairly certain it's a defective esophageal sphincter, since that's what my father has (although I hope I don't have to start balloon endoscopies to break up the scar tissue when I'm in my 40s).

Anyway, I might try really low dose stuff but don't want to do anything that'd put my stomach acid above the low end of normal.

Bromelain should also help with digesting protein, if you don't want to increase acid.
Plus it can dissolve fibrin and improve the action of antibiotics, if it isn't used up digesting the protein.
Win, win, win.

[notlupus]

I tested negative for h. pylori when my symptoms were at their worst (about 10 months after it started, plenty of time for antibodies to show up). I'm fairly certain it's a defective esophageal sphincter, since that's what my father has (although I hope I don't have to start balloon endoscopies to break up the scar tissue when I'm in my 40s).

Anyway, I might try really low dose stuff but don't want to do anything that'd put my stomach acid above the low end of normal.

Bromelain should also help with digesting protein, if you don't want to increase acid.
Plus it can dissolve fibrin and improve the action of antibiotics, if it isn't used up digesting the protein.
Win, win, win.

Thanks, I think I might give the NOW super digestion something or other supplement a try.

I'm going to be getting some kefir grains later this week if all goes well. Hopefully the beneficial yeast in there will keep the candida at bay. I'm excited to give it a try, and not have to pay the obscene prices whole foods wants for kefir.

[Lufega]

Thanks, I think I might give the NOW super digestion something or other supplement a try.

I'm going to be getting some kefir grains later this week if all goes well. Hopefully the beneficial yeast in there will keep the candida at bay. I'm excited to give it a try, and not have to pay the obscene prices whole foods wants for kefir.

I've been battling candida for a few months now. I've been going by the "spit test" to determine if candida is out of control. Yesterday, finally, my spit test is 96% string free. A few months ago it would sink to the bottom almost immediately. So maybe there is something to this test. I've been using P73 oreganol, garlicin, cayenne extract, ginger, pine cone extract, Diamond XPC, probiotics and a few other things. I'm not really sure which had an effect but something did

[notlupus]

Thanks, I think I might give the NOW super digestion something or other supplement a try.

I'm going to be getting some kefir grains later this week if all goes well. Hopefully the beneficial yeast in there will keep the candida at bay. I'm excited to give it a try, and not have to pay the obscene prices whole foods wants for kefir.

I've been battling candida for a few months now. I've been going by the "spit test" to determine if candida is out of control. Yesterday, finally, my spit test is 96% string free. A few months ago it would sink to the bottom almost immediately. So maybe there is something to this test. I've been using P73 oreganol, garlicin, cayenne extract, ginger, pine cone extract, Diamond XPC, probiotics and a few other things. I'm not really sure which had an effect but something did

I'll have to try that tomorrow and then in a couple weeks to see if the kefir does anything. Right now I'm just too tired and overworked to do a strict low carb diet.

[Lufega]

I called Specialty laboratories and asked them to give me a report on the bands tested. They all came back negative but they only tested a few bands so there's still the possibility that I am positive. These were:

IgG: p18, p23, p28, p30, p39, p41, p45, p58, p66, p93
IgM: p23, p39, p41.

This lab doesn't even test for bands 31 and 34.

I'm waiting for the Kit sent by Igenex to my country. Should take a while.

Edited by Lufega, 20 March 2009 - 08:02 PM.

[notlupus]

Have you been tested for other bacteria and viri that can have similar symptoms? HHV6, c. pneumonia (sp), mycoplasma, etc. I can get out the paperwork and list off all the other things I was tested for if you are interested.

[Lufega]

Have you been tested for other bacteria and viri that can have similar symptoms? HHV6, c. pneumonia (sp), mycoplasma, etc. I can get out the paperwork and list off all the other things I was tested for if you are interested.

Yes, please do.

[notlupus]

I thought I'd lost the paperwork, but it turns out it wasn't hard to find so I'll go ahead and type it now. Things I've been tested for:

chlamydia pneumoniae
epstein-barr (VCA, NA, etc)
CMV
E. Chaffeensis (ehrlichia)
candida
babesiosis
HHV6
M. pneumoniae (mycoplasma)
carnitine levels
celiac panel

This is in addition to all the normal panels.

[Lufega]

notlupus, thanks for the info. I just received the Igenex kit but I think I'll start an antibiotic regimen for at least one month before I send my sample in to raise my chances of a better diagnoses.

Yesterday I felt like death. Am I herxing? I plan on posting my regimen soon. I'm taking many things with anti-bacterial properties as well as immune boosting one. I really felt horrid yesterday. After sleeping it off, approx. 10 hours, I feel much better today. I also added 300 mg Doxycycline this morning and feel fine. Actually, I feel more clear headed.

I was reading more about doxy and it seems this interferes with magnesium in a negative way. First, it causes intracellular leaching of magnesium and I suspect this is how doxy induces depression and suicidal thoughts. Second, magnesium inhibits the action of doxy both at the level of the GI (by chelating with it and reducing absorption) and in the cytosol. Although, Magnesium ions that are part of the ribosome enhance doxycycline binding, but free magnesium in the cytosol can inhibit binding to the ribosome. This is all very confusing. Would it be best to cease using magnesium while on Doxy?

Lithium also competes with magnesium binding and potentially lowers it. Doxy can increase the concentration of lithium in the body and lead to toxicity. It seems best to completely avoid ALL minerals while on Doxy.

[nameless]

I thought I'd lost the paperwork, but it turns out it wasn't hard to find so I'll go ahead and type it now. Things I've been tested for:

chlamydia pneumoniae
epstein-barr (VCA, NA, etc)
CMV
E. Chaffeensis (ehrlichia)
candida
babesiosis
HHV6
M. pneumoniae (mycoplasma)
carnitine levels
celiac panel

This is in addition to all the normal panels.

Is there any significance to a positive ehrlichia? I had some basic testing done, Western Blot came back negative, although I think they sent it to a lab I didn't want them to, and didn't report all bands...

But I had co-infections tested too, and ehrlichia came back as positive for past exposure. So I guess it basically means at some point I was bitten by a sickly tick?

I'm going to pursue better Western Blot testing too, but I wasn't sure what to make of the ehrlichia result.

[FunkOdyssey]

Ruh roh. Erlichiosis is considered a Lyme co-infection for good reason -- it is very rarely present in isolation, without Lyme. What are your blood counts (WBC, RBC, platelets)? Any elevation of liver enzymes? I hope you will make Igenex testing a high priority. Its $200, not *that* expensive.

Edited by FunkOdyssey, 25 March 2009 - 07:48 PM.

[nameless]

Ruh roh. Erlichiosis is considered a Lyme co-infection for good reason -- it is very rarely present in isolation, without Lyme. What are your blood counts (WBC, RBC, platelets)? Any elevation of liver enzymes? I hope you will make Igenex testing a high priority. Its $200, not *that* expensive.

Hmm... that doesn't sound so good. That's what I was mostly curious about, if Erlichiosis increased my chances of having Lyme. I realize a tick bite increases the odds, but I didn't know if Erlichiosis and Lyme usually go together.

I did have a CBC, CMP ran at the same time, but am waiting for my doctor to mail me the results. I was told everything was normal though (besides the Erlichiosis and seemingly a million allergies via Immunocap testing). I'll know more in a day or two when I see them. She did mention that Erlichiosis wasn't active though, and it was a past infection. She wanted to know when I had it, and I had no clue -- I didn't recall any tick bites or symptoms I associated from it.

But, I have had past liver enzyme issues. Over this past summer my liver enzymes were oddly elevated, like double the range. Then re-tested several months later and they were normal.

Years and years ago, when I first noticed some odd fatigue, my liver enzymes were elevated too. But they returned to normal on their own. Then like a year later I had an iffy Lyme test, which was repeated and I was told I didn't have Lyme. Not so sure now...

And I do have a weird heart condition that no testing nor doctor seems to know the cause for.

And I'll go with Igenex, although I don't see a real problem trying local labs first -- basically free for me since they are in my plan. If I don't get proper results from them, I'll go with Igenex, but not through my regular family doctor. Not only wouldn't she know how to read the results, but if positive, she wouldn't know how to treat either. I'm going to try an ILADS doctor first, assuming he sees me. I have to write up a list of all symptoms (which when written down looks somewhat oddly... long), and send them with labs before he accepts patients.

And thanks for the reply and all the Lyme talk from people here. Without reading here that Lyme testing was unreliable, I wouldn't have considered investigating it. And a special thanks to Funk, as I slowly noticed many of the Lyme symptoms you mentioned, I seem to have had too. Perhaps it still may not be Lyme, but I want to rule it out 100%.

[FunkOdyssey]

Erlichiosis causes elevation of liver enzymes, that is why I asked. The coinciding fatigue with the elevated enzymes probably represented flareups of the infection. Doxycycline is your one-stop erlichiosis treatment: a long course at a high dose (400mg) should knock it out. If you have yet to take the Igenex western blot test, I would actually recommend waiting a few weeks *after* you have started doxycycline to increase the sensitivity of the western blot. Its called an antibiotic challenge and it facilitates the recognition of the bacteria by the immune system and antibody production.

However, your chances of getting doxycycline prescribed for your supposed "long past" erlichiosis infection may not be good with this particular doctor. If that turns out to be the case, you can find a tick-borne infection specialist (called LLMDs or Lyme Literate MDs) in your area by posting a request here:

http://flash.lymenet...ebb.cgi/forum/2?

Also, your weird heart problem that defies diagnosis has Lyme written all over it.

I'm glad we are raising awareness through our discussion here because this really is a poorly understood and largely unrecognized epidemic.

Edited by FunkOdyssey, 25 March 2009 - 08:37 PM.

[nameless]

Erlichiosis causes elevation of liver enzymes, that is why I asked. The coinciding fatigue with

However, your chances of getting doxycycline prescribed for your supposed "long past" erlichiosis infection may not be good with this particular doctor. If that turns out to be the case, you can find a tick-borne infection specialist (called LLMDs or Lyme Literate MDs) in your area by posting a request here:

http://flash.lymenet...ebb.cgi/forum/2?

Also, your weird heart problem that defies diagnosis has Lyme written all over it.

But I thought Erlichiosis wasn't chronic? Or at least that's what I read. The immune system either takes care of it, or you get real sickly and require treatment. But I though after several weeks or months, Erlichiosis was either healed, or you were kinda... dead?

And I tried that link previously. I received some doctor names, but they weren't so local, and rather expensive (don't take insurance). Is there any difference between an ILADS doctor and an LLMD? I was told they were pretty much the same thing. I have an ILADS doctor in my area, who does take most insurance.

[Lufega]

nameless,

What exactly is your weird heart problem? Is it a Mitral valve prolapse with regurgitation?

[FunkOdyssey]

Erlichiosis causes elevation of liver enzymes, that is why I asked. The coinciding fatigue with

However, your chances of getting doxycycline prescribed for your supposed "long past" erlichiosis infection may not be good with this particular doctor. If that turns out to be the case, you can find a tick-borne infection specialist (called LLMDs or Lyme Literate MDs) in your area by posting a request here:

http://flash.lymenet...ebb.cgi/forum/2?

Also, your weird heart problem that defies diagnosis has Lyme written all over it.

But I thought Erlichiosis wasn't chronic? Or at least that's what I read. The immune system either takes care of it, or you get real sickly and require treatment. But I though after several weeks or months, Erlichiosis was either healed, or you were kinda... dead?

And I tried that link previously. I received some doctor names, but they weren't so local, and rather expensive (don't take insurance). Is there any difference between an ILADS doctor and an LLMD? I was told they were pretty much the same thing. I have an ILADS doctor in my area, who does take most insurance.

Erlichiosis can persist as a long-term chronic infection in the same way that Lyme can, kept in a state of relative remission by the immune system. Given its intracellular nature, it is very difficult to eradicate completely. Your historically waxing and waning liver enzymes probably represented an accurate barometer of infection severity.

ILADS doctors would be considered a subset of LLMD's, so I would make an appt with that one in your area.

[nameless]

nameless,

What exactly is your weird heart problem? Is it a Mitral valve prolapse with regurgitation?

Idiopathic dilated cardiomyopathy, although my heart was never really dilated. Ejection fraction at diagnosis was 40% (diagnosed 4 years ago). After coreg + altace, it hovers around low normal now, at 50%. Main symptoms at the time were a lot of PVCs, fatigue and shortness of breath.

I had a ton of tests, but they basically ruled everything out. Arteries clean, microvessels clean, heart looks normal under MRI, no evidence of viral infection in heart (but that doesn't rule it out either)... except it's not beating as strong as it should. EKG is slightly abnormal too, but for a cardiomyopathy person that's sorta expected.

I do have trace regurgitation in some valves, but extremely minor -- not uncommon in most people. I also did have a slight heart murmur when first diagnosed, but that seems to have gone away. Main theory from doctors is that it was viral (coxsackie) in cause, but there isn't an easy way to test that.

[notlupus]

I was reading more about doxy and it seems this interferes with magnesium in a negative way. First, it causes intracellular leaching of magnesium and I suspect this is how doxy induces depression and suicidal thoughts. Second, magnesium inhibits the action of doxy both at the level of the GI (by chelating with it and reducing absorption) and in the cytosol. Although, Magnesium ions that are part of the ribosome enhance doxycycline binding, but free magnesium in the cytosol can inhibit binding to the ribosome. This is all very confusing. Would it be best to cease using magnesium while on Doxy?

Sorry, I'm honestly not familiar with doxy. I was off and on it before I got the lyme diagnosis, and by the time I knew it was lyme I was doxy resistant (400mg a day only kept me from getting worse).

Has anyone ordered bicillin and diflucan online? I'm really getting tired of my docs, and want to take a couple month break from their hassles. I need the diflucan but since I don't have painfully obvious oral thrush they won't give me a script. Idiots don't realize it can grow in the intestines too.

[Lufega]

I was reading more about doxy and it seems this interferes with magnesium in a negative way. First, it causes intracellular leaching of magnesium and I suspect this is how doxy induces depression and suicidal thoughts. Second, magnesium inhibits the action of doxy both at the level of the GI (by chelating with it and reducing absorption) and in the cytosol. Although, Magnesium ions that are part of the ribosome enhance doxycycline binding, but free magnesium in the cytosol can inhibit binding to the ribosome. This is all very confusing. Would it be best to cease using magnesium while on Doxy?

Sorry, I'm honestly not familiar with doxy. I was off and on it before I got the lyme diagnosis, and by the time I knew it was lyme I was doxy resistant (400mg a day only kept me from getting worse).

Has anyone ordered bicillin and diflucan online? I'm really getting tired of my docs, and want to take a couple month break from their hassles. I need the diflucan but since I don't have painfully obvious oral thrush they won't give me a script. Idiots don't realize it can grow in the intestines too.

How about oral amphotericin-B? It's not absorbed systemically so it works in the GI only. There's another too but I forget the name..

http://en.wikipedia..../Amphotericin_B

[notlupus]

I was reading more about doxy and it seems this interferes with magnesium in a negative way. First, it causes intracellular leaching of magnesium and I suspect this is how doxy induces depression and suicidal thoughts. Second, magnesium inhibits the action of doxy both at the level of the GI (by chelating with it and reducing absorption) and in the cytosol. Although, Magnesium ions that are part of the ribosome enhance doxycycline binding, but free magnesium in the cytosol can inhibit binding to the ribosome. This is all very confusing. Would it be best to cease using magnesium while on Doxy?

Sorry, I'm honestly not familiar with doxy. I was off and on it before I got the lyme diagnosis, and by the time I knew it was lyme I was doxy resistant (400mg a day only kept me from getting worse).

Has anyone ordered bicillin and diflucan online? I'm really getting tired of my docs, and want to take a couple month break from their hassles. I need the diflucan but since I don't have painfully obvious oral thrush they won't give me a script. Idiots don't realize it can grow in the intestines too.

How about oral amphotericin-B? It's not absorbed systemically so it works in the GI only. There's another too but I forget the name..

http://en.wikipedia..../Amphotericin_B

I am interested in fluconazole because of this study
http://www.ncbi.nlm....Pubmed_RVDocSum

It also seems to be the easiest to find online without a rx. Plus I might be able to get a script for it from my doc by complaining about having a vaginal yeast infection. My main concern is that the yeast might be systemic. In the last couple of days the orthostatic hypotension and skin numbness has returned and that really troubles me.

[Lufega]

notlupus,

If you have orthostatic hypotension then you are really dealing with autonomic failure (dysautonomia) possibly due to a B1 deficiency.

http://www.imminst.o...showtopic=25772

[Lufega]

I just came back from the Doc. My heart problem is worse than I thought. At the ripe old age of 29, I am diagnosed as having grade 1 heart failure almost reaching grade 2 with lung infiltration, dilated bronchiles, all 4 chambers of the heart are dilated and hypertrophied and I have cardiomegaly. My blood pressure was 90/70. I also have aortic notch dilatation surely leading to aortic aneurism. However, I present none of the typical clinical signs for someone with this problem so the Doctor's were stumped. They said soon I will need Digitalis and diuretics. They ruled it out as being "of genetic origin." I guess they've never heard of Lyme carditis.

I'm going to add Ubiquinol 200 mg healthy origins and pomegranate seed extract to my stack.

[nameless]

I just came back from the Doc. My heart problem is worse than I thought. At the ripe old age of 29, I am diagnosed as having grade 1 heart failure almost reaching grade 2 with lung infiltration, dilated bronchiles, all 4 chambers of the heart are dilated and hypertrophied and I have cardiomegaly. My blood pressure was 90/70. I also have aortic notch dilatation surely leading to aortic aneurism. However, I present none of the typical clinical signs for someone with this problem so the Doctor's were stumped. They said soon I will need Digitalis and diuretics. They ruled it out as being "of genetic origin." I guess they've never heard of Lyme carditis.

I'm going to add Ubiquinol 200 mg healthy origins and pomegranate seed extract to my stack.

Sorry to hear about that. What is your ejection fraction at now? And were you prescribed Coreg or an ace inhibitor? Although it's tricky for you, due to your already low blood pressure.

And what diagnosis did the doctor give you for your heart condition?

[rwac]

I just came back from the Doc. My heart problem is worse than I thought.

Thats not good.
What kind of test did the doc have to do to find this problem ?

Do you know if you have a fibrin problem ?
Perhaps you might benefit from taking Bromelain, Serrapeptase etc.

[Lufega]

delete

Edited by Lufega, 27 March 2009 - 10:33 PM.

[Lufega]

I just came back from the Doc. My heart problem is worse than I thought.

Thats not good.
What kind of test did the doc have to do to find this problem ?

Do you know if you have a fibrin problem ?
Perhaps you might benefit from taking Bromelain, Serrapeptase etc.

It was a simple chest X-ray. The results stunned even the technician. He did not believe what he was seeing for my age so he repeated the X-ray to confirm and the result was the same. I have the heart of a 60 years old man. I then had an EKG which confirmed the enlarged heart. I'm having an eco and MRI done next week and some blood work in the next few days.

What's interesting is that I don't present the typical clinical signs for heart failure like coughing and edema so no one really knows what's going on. I think it's due to an AV block, Mobitz I, which is a common presentation in Lyme disease.

I don't know if I have a fibrin problem. How can I test for that? PT? PTT? I do have connective tissue problems. I have a marfanoid habitus and other presentations...

I started using bromelain, serratopeptase, nattokinase and pancreatin last week. What other supplements might be useful in this scenario?

One positive spin on all this is that a former mitral valve prolapse I had seems to have dissapeared. At least the murmur that was once audible is no longer present. I attribute this to my use of magnesium.

http://www.ncbi.nlm....3?dopt=Abstract

[nameless]

An echo is the test you want. Or better yet, a cardiac MRI. How did they diagnose you with heart failure without seeing how well the heart was working? The enlargement and EKG are big clues, but they won't know how your heart is pumping without an echo (or at least that's what I assumed).

Hypertrophic cardiomyopathy sounds like a possibility there, although I'm not so knowledgeable about that type. And did your doctors state it was of genetic origin, or say it was ruled out as being of genetic origin?

And did your EKG show AV block? If so, that is a big Lyme clue.

I assume you have made an appointment with a heart failure specialist too. Regular cardiologists are okay, but you really want someone who deals mostly with heart failure, so they'll know what to look for and what to prescribe. And definitely get that Lyme test done, along with co-infections, to see if any Lyme involvement is there. I'm not sure I'd try the supplementation route here... best to see a specialist and get the proper treatment, and then consider supplements. Last thing you'd want to do is take something that could make you worse, which is a possibility until you know exactly what you have.

Edited by nameless, 27 March 2009 - 11:43 PM.

[Lufega]

http://www.circ.ahaj...tract/100/5/461

Desmin Mutation Responsible for Idiopathic Dilated Cardiomyopathy

-----------

The AV block was found years ago by an EKG....or was it a 24 hour holster? Whatever the case was, this is most likely what's causing the the problems and the cardiomegaly is just the natural outcome of it. I just learned of the relationship between AV block and Lyme in class a few weeks ago but my cardiologist missed this link. This just complicated everything. Now I have to check every supplement for contra-indications. The supplements (Coq10, carnitine, hawthorn, taurine, magnesium) are just to cover some bases but I'm definitely seeing the Doc. about this one.

Edited by Lufega, 28 March 2009 - 04:29 AM.

[notlupus]

notlupus,

If you have orthostatic hypotension then you are really dealing with autonomic failure (dysautonomia) possibly due to a B1 deficiency.

http://www.imminst.o...showtopic=25772

Read the topic, thanks for the info! I guess sulbutiamine or TTFD allithiamine are the best options?

Sorry to hear about your problems. Wish I could help, but it's not something I'm familiar with.