354 replies to this topic

[rwac]

Here's a book about Lyme.
I don't know if you're already read it.
It seems to have some of the stuff you're talking about,
thats how I found it.

Chronic Fatigue, Fibromyalgia & Lyme Disease

[pycnogenol]

I'm going for a blood test today and I'll put the results up next week.

Hi Funk,

Did you get your blood tests back?

[FunkOdyssey]

Yes, my liver enzymes were actually amazingly good, kidney function is normal, but it looks like my pancreas is taking a beating. While tetracycline can occasionally cause pancreatitis and there are some case reports in the literature, my doctor thinks its more likely that [when it happens in Lyme] there are bacteria in the pancreas that are dying off and producing inflammation. I'll post the full report later this evening.

[rwac]

Here's the link again. I could swear I tested the link before posting it.

http://books.google....esult#PPA406,M1

Apparently Grape seed can interfere with tissue uptake of doxycycline & tetracycline.

http://ntp.niehs.nih...ds_PineBark.pdf

According to an Internet source, there have been reports of a possible decrease in
effectiveness of antibiotics, specifically tetracycline and tetracycline derivatives caused
by grape seed extracts (BroadcastHealth.com, 2000).

Edited by rwac, 24 January 2009 - 01:21 AM.

[niner]

How do you feel when you are on antibiotics? Have you ever been tested for Lyme, mycoplasma, chlamydia pneumoniae? I am 100% convinced that the vast majority of autoimmune patients are chronically infected with intracellular pathogens that may not be easily detectable with current technology. Response to empiric trials of broad spectrum antibiotics with good penetration into tissues and cells (tetracyclines, macrolides, etc) is of greatest diagnostic value IMHO.

I suffered from a moderately severe reactive arthritis about a dozen years ago. It popped up shortly after eating bad clams. Bad clam pizza, in fact, which made me sick as hell for about a day. Despite what I'd think might have been a tip-off, four different doctors, one of whom was a rheumatologist, couldn't sort it out. It wasn't until I had a course of a broad spectrum macrolide (Biaxin) for a completely unrelated problem that it cleared up. I don't know how many autoimmune cases have this sort of etiology, but mine did. It sucked, too.

Edited by niner, 24 January 2009 - 04:11 AM.

[youandme]

I think you have the causality relationship backwards. Low thyroid hormone results in sluggish bowel movement with increased intestinal transit time, which are conditions that support small intestine bacterial overgrowth. The food is hanging around longer and bacteria have more time to ferment it and multiply. The article says as much:

Yep Funk you are right,

Actually I was not meaning to infer that the Bacteria came first..more this study is a small revelation to me that this can occur...the fact is after reaching the correct Thyroid Hormone levels via replacement, my Tummy movements are much improved...all those years with IBS infers I had Thyroid problems for some years before Diagnosis...and cept for things like that Strawberry Topping or those MaltoDextrin sweets my tummys right...these issues now suggests I still have some kind of problem..

This study also highlights very well how one issue can lead to many others..

The thing is...Doctors tell you nothing...they seem to be very badly trained in this area...I expect very few Autoimmune Thyroid Patients know why they have bad tummies...or that people with IBS may also have Thyroiditis.

[FunkOdyssey]

Apparently Grape seed can interfere with tissue uptake of doxycycline & tetracycline.

http://ntp.niehs.nih...ds_PineBark.pdf

According to an Internet source, there have been reports of a possible decrease in
effectiveness of antibiotics, specifically tetracycline and tetracycline derivatives caused
by grape seed extracts (BroadcastHealth.com, 2000).

Thanks for the heads up, I don't know how seriously I can take that though. Its an internet source quoting another internet source from 8 years ago that is no longer available, saying that there have been reports of a possible decrease in effectiveness. I can't find any reports of possible decreased effectiveness. I also logically do not see how this could be, the tetracyclines do not have a pro-oxidant action that grape seed extract could interfere with -- they bind to a specific part of the bacteria's DNA and inhibit protein synthesis. I am somewhat curious / concerned but I would need better evidence or a mechanistic explanation before I buy into the idea.

[FunkOdyssey]

Blood test results from last Friday 1/16/2009 at 2:33pm (30min after lunch)

Comprehensive Metabolic Profile

Glucose: 93 (65-99 mg/dL)
Urea Nitrogen (BUN): 18 (7-25 mg/dL)
Creatinine: 1.03 (0.50-1.30 mg/dL)
eGFR: >60 (>60 mL/min/1.73m2)
Sodium: 139 (135-146 nmol/L)
Potassium: 4.2 (3.5-5.3 nmol/L)
Chloride: 103 (98-110 nmol/L)
Carbon Dioxide: 28 (21-33 nmol/L)
Calcium: 9.9 (8.6-10.2 mg/dL)
Protein, Total: 7.2 (6.2-8.3 g/dL)
Albumin: 4.8 (3.6-5.1 g/dL)
Globulin: 2.4 (2.1-3.7 g/dL)
Albumin/Globulin Ratio: 2.0 (1.0-2.1)
Bilirubin, Total: 0.7 (0.2-1.2 mg/dL)
Alkaline Phosphatase: 55 (40-110 U/L)
AST: 18 (10-40 U/L)
ALT: 21 (9-60 U/L)

CBC

White Blood Cell Count: 3.5 (3.8-10.8 Thousand/uL)
Red Blood Cell Count: 4.74 (4.20-5.80 Million/uL)
Hemoglobin: 14.4 (13.2-17.1 g/dL)
Hematocrit: 41.0 (38.5-50.0%)
MCV: 86.5 (80.0-100.0 fL)
MCH: 30.4 (27.0-33.0 pg)
MCHC: 35.1 (32.0-36.0 g/dL)
RDW: 13.8 (11.0-15.0%)
Platelet Count: 130 (140-400 Thousand/uL)
MPV: 11.5 (7.5-11.5 fL)
Absolute Neutrophils: 1600 (1500-7800 cells/uL)
Absolute Lymphocytes 1432 (850-3900 cells/uL)
Absolute Monocytes: 287 (200-950 cells/uL)
Absolute Eosinophils: 154 (15-500 cells/uL)
Absolute Basophils: 28 (0-200 cells/uL)
Neutrophils: 45.7%
Lymphocytes: 40.9%
Monocytes: 8.2%
Eosinophils: 4.4%
Basophils: 0.8%

Comment: Poikilocytosis 1+

Lipase: 83 (7-60 U/L)

This is about 8 days into the tetracycline regimen when I was feeling my worst. White cells are normally around 4.0-4.4 for me, this is low because of all the immune warfare going on but not dangerously low. Platelets are actually pretty good, usually they are in the 110-120 range with an out-of-range high MPV. Last time I took tetracycline my platelets ultimately got up into the normal range, but then fell back down when my doctor switched me to a biaxin + ceftin combination. This time I intend to stay on the tetracycline much longer and augment it with additional antibiotics in a few weeks.

Poikilocytosis means the blood cells are shaped weird. Yeah, they're full of bacteria, forgive them if they aren't perfectly round.

The lipase is a bit alarming. My original pre-treatment value was 32, and it has been steadily climbing recently, first on azithromycin + mepron it rose to the mid 50's range and now its 83 on tetracycline. I'm adding 2400mg NAC to my regimen immediately (screw the mouse PAH study) and have some PPC on the way in the form of LEF HepataPro. I repeat these blood tests every two weeks, so we'll see what happens next Friday. I am hoping these interventions are effective, otherwise I will have to back off my treatment until the pancreas recovers.

Because two or three completely different types of antibiotics separately contributed to driving up the lipase value, I am inclined to think the inflammation is a result of fighting/dying bacteria within the pancreas and not a direct effect of an antibiotic.

Edited by FunkOdyssey, 24 January 2009 - 08:14 AM.

[ajnast4r]

I'm adding 2400mg NAC to my regimen immediately (screw the mouse PAH study)

agreed

[youandme]

Thanks Funk for sharing you results..
Please can you educate me on 'Lipase' ? ..Im sure I have not had this checked

[Lufega]

When I opened this thread, I was expecting to see things like cat's claw and andrographis, but I was pleasantly surprised.

[FunkOdyssey]

Thanks Funk for sharing you results..
Please can you educate me on 'Lipase' ? ..Im sure I have not had this checked

Its a digestive enzyme that is stored within the pancreas and secreted to digest dietary fat. When the pancreas is inflamed, some of it leaks out and circulates in the blood. Its a marker for pancreatic distress/damage.

Edited by FunkOdyssey, 26 January 2009 - 04:34 AM.

[FunkOdyssey]

Updated the original post to reflect additions to regimen:

NAC 600mg 4x (2400mg daily)
PPC 900mg 3x (2700mg daily)
L-Glutamine 5g 3x (15g daily)
L-Arginine 1.5g 4x (6g daily)
L-Glycine: 3g daily
Butterbur Extract 75mg 3x (225mg daily)

And changes:

Lithium Orotate increased to 5mg 2x (10mg daily)
Creatine increased to 1.66g 4x (6.66g daily)
P-5-P increased to 100mg 3x (300mg daily)

I plan to phase out Pyridoxamine as I use up my supply, its too expensive and P5P may be as effective. I also want to reduce the dose of PPC as soon as my Lipase comes down because that is an obscenely expensive supplement.

Edited by FunkOdyssey, 27 January 2009 - 08:12 PM.

[nowayout]

Updated the original post to reflect additions to regimen:

NAC 600mg 4x (2400mg daily)
PPC 900mg 3x (2700mg daily)
L-Glutamine 5g 3x (15g daily)
L-Arginine 1.5g 4x (6g daily)
L-Glycine: 3g daily
Butterbur Extract 75mg 3x (225mg daily)

I stopped L-arginine supplementation on the basis of the following study:

http://www.circ.ahajournals.org/cgi/content/abstract/116/2/188
L-Arginine Supplementation in Peripheral Arterial Disease: No Benefit and Possible Harm

This study showed that despite prior short-term studies showing better vascular function on L-arginine, long-term (6 month) administration can actually paradoxically significantly worsen vascular health compared to placebo. This study was done on PAD sufferers, but presumably the same could be true for healthy subjects.

Have you considered this risk?

[FunkOdyssey]

I'm not using it for vascular health, its to support the immune system. Arginine is one of the standard nutrients given in large quantities to surgical patients, the critically ill, people with sepsis (you can think of Lyme as a form of sepsis, since many of the blood cells are infected), etc. Arginine requirement is higher in these scenarios.

[nowayout]

I'm not using it for vascular health, its to support the immune system. Arginine is one of the standard nutrients given in large quantities to surgical patients, the critically ill, people with sepsis (you can think of Lyme as a form of sepsis, since many of the blood cells are infected), etc. Arginine requirement is higher in these scenarios.

Okay, I guess arginine would be safe for vascular function if the immune system support used up the supplementary arginine and not enough were left over to significantly affect your arteries. I am not sure if that kind of targeting really happens, though. I guess there would be some risk if enough arginine is left over to affect vascular function, in which case the latter may be harmed in the long term. I guess you will know if this is happening if you notice some vasodilatory effect from the arginine.

[Lufega]

Funk,

What do you think about Una de gato? Is it effective at all for lyme. I am living outside the states now and the Igenex western blot is not available here. I'm desperate for a diagnosis so I'm trying to work with the labs here to see if they can get it for me. One lab here works with a lab in california and they also perform a western blot. I don't now how effective it is but I'm going to do it anyways. Maybe I'll get lucky.

One of my professors this semester is an Infectious disease doctor that study in Harvard and lived in conneticut for sometime. She's well familiar with Lyme disease and confirmed that many of my symptoms (including a 2nd degree AV block) are seen in Lyme. I think I'm close to a diagnosis. The next challenge will be testing.

[Lufega]

Would manganese supplementation be contraindicated for Lyme? BB uses manganese instead of of iron for all it's enzymatic activities. I tested low for manganese on a hair mineral analysis and want to start supplementing for it's many functions in connective tissue. Maybe the low levels of manganese could explain why my case isn't as bad as others like I saw in the "under our skin" documentary.

Would supplementing with this stimulate the bacteria to multiply and enhance the progression of the disease?

[FunkOdyssey]

I think if una de gato is effective for Lyme it is either relieving symptoms with anti-inflammatory activity or stimulating some aspect of the immune system. There is one unpublished study where Samento (a POA-free extract of cat's claw) cured Lyme in 80-something percent of patients, but I don't buy it since a) its unpublished and b) conducted by manufacturer.

In order to sort fact from fiction in the quack-ridden world of Lyme treatment, you must seek to understand the mechanism of action behind every purported treatment. Tetracycline inhibits the 30s ribosome of the bacteria, stops it from synthesizing protein. Amoxicillin interferes with the formation of the bacterial cell wall. This data is published and available in pubmed. How does a tincture of cat's claw kill the bacteria and does this occur in vivo at concentrations achievable with oral ingestion? That's the question you want to answer before considering it.

I have not seen any studies that suggest there is any relationship between manganese intake and Lyme Disease outcomes. It would be logically appealing to assume there might be, however I don't think it makes much difference. Since Lyme does not produce symptoms of manganese deficiency, and no deficiency has been reported, the implication is that Lyme does not use all of the manganese available in the body and that it is not a limiting factor in growth. Therefore, I am skeptical that restriction of manganese would be useful or would be more helpful than harmful to the host.

Edited by FunkOdyssey, 02 February 2009 - 04:41 PM.

[rwac]

Ubiquinol - heart biopsy seems to indicate reduced CoQ10 in muscle tissue of Lyme patients, reported by a famous Lyme doc (Burrascano), don't have a reference.
Grape Seed Extract - protect circulatory system from inflammation, neuroprotective, stimulates immune system
Green Tea Extract - I haven't investigated this with regard to Lyme, it simply does so many good things and is so cheap, it is in every regimen I'm involved with
Quercetin - Anti-viral, maintains strength of immune system under conditions of extreme stress (see the study with pro cyclists or PM me and I"ll find it)
Curcumin - Neuroprotective, anti-inflammatory, remove beta-amyloid. Lyme definitely produces beta-amyloid plaque, however I don't know for sure whether this is a problem at a young age, that's an educated guess I'm making (I think it is possible especially when dementia-like symptoms are present).
Selenium - positive correlation between selenium intake and immune function:

I added those things in, except the Green Tea.
One of those seems to be making me feel sick.
Might be the Grape Seed, I've heard anecdotal reports of people herxing with Grape Seed.

[FunkOdyssey]

My interventions to reduce pancreatitis (as measured by Lipase) worked, so the show will go on. Lipase dropped from 83 to 56 (normal range 0-60) after only one week on 2400mg NAC and 2700mg PPC. I plan to reduce the dose of PPC asap because it is very expensive. Fasting glucose also dropped from 93mg/dL to 86mg/dL, might be related to improvement in pancreas health? Don't know, but that is the first fasting glucose I've had under 90mg/dL to date.

[nameless]

Fasting glucose also dropped from 93mg/dL to 86mg/dL, might be related to improvement in pancreas health? Don't know, but that is the first fasting glucose I've had under 90mg/dL to date.

Is the grapeseed in your regimen something new, or have you always used it? If new, that could be the reason --

Effects of grape seed extract and its ethylacetate/ethanol fraction on blood glucose levels in a model of type 2 diabetes.

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

Although you aren't diabetic, I suppose it still could lower glucose levels. I think Pycnogenol works similarly. Pancreas would seem to make sense too.

[FunkOdyssey]

Actually I was not using the grape seed extract before, so that is a new addition. You might be onto something.

[nameless]

A glycated hemoglobin test would be the best way to figure out if it's a true glucose decrease, or just a random fluctuation type of thing. I'm not sure if a single test is really enough to say your glucose levels have truly lowered, although since it was never below 90 before, perhaps it has. If you've had glycated hemoglobin tested in the past, you'll have a good idea when you compare it to the new value.

Edited by nameless, 04 February 2009 - 08:48 PM.

[ajnast4r]

My interventions to reduce pancreatitis (as measured by Lipase) worked, so the show will go on. Lipase dropped from 83 to 56 (normal range 0-60) after only one week on 2400mg NAC and 2700mg PPC. I plan to reduce the dose of PPC asap because it is very expensive. Fasting glucose also dropped from 93mg/dL to 86mg/dL, might be related to improvement in pancreas health? Don't know, but that is the first fasting glucose I've had under 90mg/dL to date.

glad to hear man

[Lufega]

I realized something interesting. Osteomyelitis, which is an infection of bone, is very difficult to treat for the same reasons Lyme is. The infection hides in areas with poor circulation where the immune system and antibiotics have very little access. For this reason, Osteomyelitis is considered a problem for life! Aside from actually drilling into the affected bone and injecting antibiotics directly, both disease are treated very similarly, for example, using Hyperbaric oxygen chambers with long term antibiotics to increase its effectiveness. Additionally, many of the same antibiotics are used, doxycycline, ceftriaxine, etc. When I was sitting in class listening to this, I kept thinking about Lyme.

However, in osteomyelitis, there is one special antibiotic used that has good tissue penetration and a good success rate. It's called Zyvox (Linezoid). Problem is, one treatment will run you about 30K or more. The good news is I think the company that produces this just lost the patent so generics should be springing up soon if not already. If this drug succesfully treats osteomyelitis, then I think it too can be used to Lyme but I haven't found any studies to back this up.

Any chance of getting a dedicated Lyme thread going?

The country I'm living in now only performs the western blot IgM and IgG through specialy labs in california. I know the igenex is the best test out there but I don't have access right now. Has anyone heard anything positive or negative about this lab? I'm doing the test anyways just so I feel like I'm doing something constructive!

Edited by Lufega, 05 February 2009 - 02:49 AM.

[youandme]

My interventions to reduce pancreatitis (as measured by Lipase) worked, so the show will go on. Lipase dropped from 83 to 56 (normal range 0-60) after only one week on 2400mg NAC and 2700mg PPC. I plan to reduce the dose of PPC asap because it is very expensive. Fasting glucose also dropped from 93mg/dL to 86mg/dL, might be related to improvement in pancreas health? Don't know, but that is the first fasting glucose I've had under 90mg/dL to date.

Second the good news !
Hope you can figure out which 'supp' did it for you for sure.

[FunkOdyssey]

I'm going to maintain the NAC dosage and wean off the PPC while continuing to get my Lipase checked every two weeks. Hopefully, we will learn it was the dirt cheap NAC that was effective and not the liquid gold PPC.

I'm about to start experimenting with eleuthero (siberian ginseng) for energy and adrenal fatigue which I'm starting to think is a real disorder again. I have some objective signs like a highly variable/low body temperature (95.5 - 97.2) despite optimal thyroid hormone levels and orthostatic hypotension, which both responded to an experimental 10mg dose of hydrocortisone and on a separate occasion to 200mg glycerrhizin. I would like to avoid using either of these substances on a chronic basis though, to avoid suppressing endogenous hormone production, and because glycerrhizin has a well-documented testosterone lowering effect.

Does anyone have any experience with eleuthero or recommended brands? I would be taking a serious multi-gram dosage, and looking for substantial without-a-doubt non-placebo effect. I am more interested in it than most other adaptogens because from what I can gather, the majority of adaptogens reduce cortisol levels which would seem to be counterproductive in my case. Eleuthero is the only one I've seen in the literature actually raises cortisol levels.

Edited by FunkOdyssey, 06 February 2009 - 07:37 PM.

[nowayout]

...to avoid suppressing endogenous hormone production, and because glycerrhizin has a well-documented testosterone lowering effect.

Does anyone have any experience with eleuthero or recommended brands? I would be taking a serious multi-gram dosage, and looking for substantial without-a-doubt non-placebo effect. I am more interested in it than most other adaptogens because from what I can gather, the majority of adaptogens reduce cortisol levels which would seem to be counterproductive in my case. Eleuthero is the only one I've seen in the literature actually raises cortisol levels.

This may be a bit out there and maybe useless information, but tadalafil appears to raise both cortisol and testosterone when combined with exercise, more than placebo. For those who take tadalafil anyway, this may be a useful side effect.

http://jcem.endojour...tract/93/9/3510

[youandme]

I'm about to start experimenting with eleuthero (siberian ginseng) for energy and adrenal fatigue which I'm starting to think is a real disorder again.

Apologies I cant answer your question re Ginseng...

From a different angle what about LDN...Ive noticed since restarting at 3.5mg liquid dose.. more available energy..reduced fatigue.
However Id be more than happy if Ginseng does it for you..then it might work for others..including me !

Is your cortisol low in range , midrange ?

Hoping someone can answer your Ginseng question.

Cheers