216 replies to this topic

[k10]

It's a possibility that you're not dealing with lyme at all if you have no reaction to such a high dose of doxycycline.

I have a hunch that what you're dealing with might be some sort of parasite. Do you have gastrointestinal problems? There are many parasites that can cause your symptoms, right down to the heart problems.

Doctors data offers a comprehensive stool analysis that checks for dysbiotic bacteria, yeast, and parasites. I would highly recommend it even if what you have is lyme, as usually there are multiple things going on that are contributing to the whole syndrome of symptoms.

You can order it directly here:
https://www.directla...US/Default.aspx

You can just do Parasitology x3 (three stools samples for maximum accuracy) for $149 dollars, or Comp Stool Analysis CSAPx3 for $365.

Sample report: https://www.directla...type=testsample

[Lufega]

k10,

That idea, that it might not be Lyme has crossed my mind several times in the last few weeks. I do not react to doxy. and I don't recall ever using it before so I doubt my critters have build resistance...unless I was infected with an already resistant strain. I do have herx like reactions from other things like venus fly trap extract, garlic, high dose oreganol but these could also be affecting other organisms. On a side note, I've tried black walnut extract and always felt a cognitive boost from it almost as if it cleared my head some. Being in the caribbean, I contracted either amebiasis or giardia lamblia twice although the stool test came back negative for anything. I also think I was infected with Dengue fever. I just tested for antibodies so I'll know real soon. I also used diatomaceous earth for sometime which is supposed to rid any intestinal parasites. I've also taken metronidazole for up to 14 days on more than one occasion. What I need here is more rigorous testing like those notlupus recommended and the stool analysis. Being overseas, however, complicates things quite a bit. Money is going to be tight for the next month and I don't think I'll be sending my blood sample to Igenex anytime soon. I'm also going to see an infectious disease Doctor and see if I can get better guidance there...

[Lufega]

Lufega, what dose of carnitine do you use? I'm thinking I might not have been taking enough last time and that's why I didn't notice a difference.

I was using 500 mg for a few months without any noticeable difference. I raised the dose to 3 grams obtained good benefits for a few weeks. I just added another gram to equal 4. I read a post here that 5 grams is the max before you induce oxidative stress and require ALA?

[notlupus]

Lufega, definitely sounds like it might not be lyme if you aren't responding to 300mg of doxy. 500mg of carnitine a day didn't do a thing for me either (why I quit taking it) but I'll up the dose to 3g a day. That seems to be the suggested dose for carnitine deficiency anyway, from what I can find. At least the powder is cheap at bulk nutrition.

I'm starting to think the adderall is catching up to me and I'm having some adrenal fatigue issues thanks to trying to push my self too hard for too long. Today I was feeling decent until I took my normal dose then I had to take a nap. :(

I've been off the metronidazole for a week and my stomach is still upset. I bought flushable wet wipes. Guess it's time to go get a stool test, although I'll get one done at the health center since my insurance covers it 100%

[FunkOdyssey]

I also think if you have no response, good or bad, to doxycycline or metronidazole at high doses for several weeks then you are probably not dealing with Lyme.

[nameless]

There is also the possibility it's simply your heart condition causing all of your symptoms. Although I don't know what all of your symptoms are, so can't say anything for certain.

Cardiomyopathy, or heart failure from some other cause, certainly can make you tired and feel unwell. I know I felt really crummy right before I was diagnosed. I still feel kinda crummy, but not quite as bad as back then. And when your heart isn't work that great, it begins to effect other organs too. But you said you didn't have the normal symptoms of heart failure, right? Like shortness of breath, or swelling in ankles, etc? Any weird heartbeats?

Perhaps try to get the coinfection and other Lymey things tested, if you can't do the Igenex test now? You should be able to get those things through a normal lab.

[notlupus]

There is also the possibility it's simply your heart condition causing all of your symptoms. Although I don't know what all of your symptoms are, so can't say anything for certain.

If high doses of doxy didn't make a difference it's not likely to be mycoplasma or C. pneumoniae either. Both infections are known to be associated with heart problems. Still lots of fungal and viral options left though.

[k10]

Bert Thomas, a 45-year-old geologist, was a wilderness enthusiast. He loved hiking, rock climbing and mountain biking and was an excellent athlete. In the spring of 1994 he took his three children and went backpacking in the Wyoming wilderness. Always mindful about the dangers of drinking surface water, even in a seemingly pristine wilderness, he made sure to boil or filter every drop of water they drank.

On his return home he began to experience bouts with diarrhea and became increasingly fatigued. He lost all energy and stopped participating in the outdoor sports that had become a regular part of his life. He began to lose weight, suffer from dizzy spells, and became short of breath. Doctors were unable to find a cause for his problems. Because the illness began soon after his return home from Wyoming, a stool sample was tested for parasites. The tests came back negative. Over the next six months in an attempt to find the cause of his illness he was treated for ulcers, had blood tests, abdominal scans, and X rays. Symptoms became worse. He began having blackouts and heart palpitations and was hospitalized. Monitoring his heart revealed a serious abnormality called arrhythmia. It was assumed this was the cause of his dizzy spells and blackouts. He was given medication to control the arrhythmia but after a while stopped taking it because of the side effects. Despite the negative tests from the stool specimen, his doctor gave him medication to treat giardia because there was little else they could do.

He felt dramatic relief of the diarrhoea and regained much of his former energy. As Bert found out, a common problem with tests for parasites is that they are often wrong. A negative reading doesn't necessarily mean there are no parasites present.

His heart palpitations and dizziness continued and seemed to become aggravated when he attempted to exercise. He went to another doctor, an expert in intestinal disease, who recognized the symptoms immediately as giardiasis. Another stool test was performed to make sure that the giardia had been eradicated. It was.

While the parasites may have been removed, the damage done by them wasn't. Intestinal permeability tests showed Bert was having trouble absorbing nutrients and was suffering from a mineral deficiency. He was given a multiple vitamin and mineral supplement. Within a month Bert reported a 90 percent reduction in heart palpitations and dizziness and was able to resume his favorite sports. It took nine months on high doses of supplements for his body to recover completely from the damage caused by the giardia infection.

It was assumed that Bert became infected with giardia while he was in the wilderness, but that may not be so. Tap water can also be a source of contamination. The water treatment process doesn't remove all contaminants and parasites. Single-celled organisms such as cryptosporidium and giardia are particularly troublesome because they can often slip through water purification treatments unharmed. Since these organisms are protected by a tough outer coat, the chlorine added to municipal water supplies to kill germs has little effect on them. Because of their small size, very fine filters are needed to trap them, and complete elimination of these parasites from tap water isn't possible. Drinking-water regulations are designed to reduce, but not necessarily eliminate, parasite contamination; so even water systems that meet government standards may not be free of parasites. Water supplies must be constantly monitored to detect levels above acceptable limits, even then there exists the potential for giardia infection. The most susceptible are those who have a weak immune system incapable of mounting an effective defense against the organism. This is seen mostly in the very young and the elderly and those affected with other immune-suppressing illnesses such as AIDS.

Giardia and cryptosporidium normally live in the digestive tracts of many mammals. Public water supplies can become infected with these organisms when they are contaminated by sewage or animal waste. Although you may not hear about it, outbreaks occur all the time, usually in smaller cities and occasionally in large metropolitan areas. In 1998 the three million residents of Sydney, Australia were advised by the Health Department to boil all their tap water because high concentrations of giardia and cryptosporidium were detected in the city's water supply. In this instance most people were spared from infection because they were warned in time.

Unsafe water is an embarrassment to the water department of any city and sometimes officials are unwilling to admit that a problem exists until it's too late. This is apparently what happened in Milwaukee, Wisconsin in 1993. A breakdown in water sanitation permitted cryptosporidium to contaminate the city's drinking water for a week. As a result, a hundred people died and 400,000 suffered stomach cramps, diarrhea, and fever that are characterized by the parasite. Recent outbreaks have occurred in several cities in California, Colorado, Montana, New York, Pennsylvania, and Massachusetts to name just a few.

Cryptosporidium is believed to be in 65 to 97 percent of the nation's surface waters (rivers, lakes, and streams), according to the Centers for Disease Control and Prevention (CDC). About half of our tap water comes from treated surface water. Giardia is a much bigger problem. It is commonly found in the pretreated water system used by some 40 million Americans and has caused epidemics in several small cities.

Giardiasis ranks among the top 20 infectious diseases that cause the greatest morbidity in Africa, Asia, and Latin America. It is the most common parasite diagnosed in North America. The CDC estimates that two million Americans contract giardiasis every year.¹

Giardia can live in a variety of water sources: streams, ponds, puddles, tap water, and swimming pools. Infection is spread by contact with an infected source. You don't have to drink contaminated water to become infected. Giardiasis can spread by sexual contact, poor personal hygiene, hand-to-mouth contact, and from food handlers who don't wash their hands thoroughly. If hands are exposed to contaminated water, animals, people, or faeces (e.g., litter boxes, diapers) it could spread to you. Shoes can come in contact with animal droppings and bring it inside the home. Veterinary studies have shown that up to 13 percent of dogs are infected. Any pet can become a source of infection for humans although they may not show signs of infection.

Infection can come from the most unsuspected sources. One family get-together proved this point. A few days after a party 25 people who attended reported gastrointestinal distress. They were all found to be infected with giardia. On investigation, suspicion fell on the fruit salad. It was discovered that the salad became infected by the food preparer who hadn't properly washed her hands. She had a diapered child and a pet rabbit at home both of which tested positive to giardia.

A study at Johns Hopkins Medical School a few years ago showed antibodies against giardia in 20 percent of randomly chosen blood samples from patients in the hospital. This means that at least 20 percent of these patients had been infected with giardia at some time in their lives and had mounted an immune response against the parasite.

Giardia is rampant in day-care centers. A study in 1983 showed 46 percent of those who were infected were associated with day-care centers or had contact with diaper-age children. It is estimated that 20 to 30 percent of workers in day-care centers harbour giardia.² In a study done in Denver, Colorado with 236 children attending day-care centers, it was found that 38 (16%) were infected.³

Symptoms of infection are similar to those of the flu and often misdiagnosed. We don't usually think of parasites when be feel "under the weather." I wonder how many times when the "flu" goes around that the real cause is parasites in the water supply? Symptoms vary. In acute cases symptoms are usually most severe and can include any of the following listed in order of prevalence:

Diarrohoea
Headaches
Malaise (a sense of ill being)
Anorexia
Weakness
Abdominal Bloating
Abdominal Cramps
Flatulence
Weight Loss
Constipation
Greasy, foul-smelling stools
Vomiting
Nausea
Fever

Infection can persist for weeks or months if left untreated. Some people undergo a more chronic phase that can last for many months. Chronic cases are characterized by loose stools and increased abdominal gasiness with cramping, depression, fatigue and weight loss. Some people may have some symptoms and not others while some may not have any symptoms at all.

Giardiasis can be mistaken for a number of other conditions including the flu, irritable bowel syndrome, allergies, and chronic fatigue syndrome. Many people are diagnosed and treated for these other conditions without finding relief.

Even if giardia is diagnosed and treated, it can damage the intestinal lining causing chronic health problems that persist for years after the parasite is gone. Food allergies, including lactose (milk) intolerance can develop. Damaged intestinal tissues become leaky. This is often referred to as leaky gut syndrome. Toxins, bacteria, and incompletely digested foods are able to pass through the intestinal wall into the bloodstream, initiating an immune response. Sinus congestion, aches and pains, headaches, swelling, and inflammation—all typical symptoms of allergies—are the result.

Loss of intestinal integrity can lead to gastrointestinal discomfort known as irritable bowel syndrome (IBS). Dr. Leo Galland, an expert in gastrointestinal disease, demonstrated that out of a group of 200 patients with chronic diarrhea, constipation, abdominal pain, and bloating, half of them were infected with giardia. Most of these patients had been told they had irritable bowel syndrome. He notes that parasitic infection is a common event among patients with chronic gastrointestinal symptoms and many people are given a diagnosis of irritable bowel syndrome without a thorough evaluation.

Another consequence of poor intestinal integrity is fatigue resulting from malabsorption of important nutrients. If the condition persists it can lead to chronic fatigue syndrome. A giardia infection can be so draining on the immune system that it causes fatigue. Again the cause is often misdiagnosed. A giardia epidemic in Placerville, California, for example, was mysteriously followed by an epidemic of chronic fatigue syndrome. In 1991 Dr. Galland and colleagues published a study of 96 patients with chronic fatigue and demonstrated active giardia infection in 46 percent. In another study of 218 patients whose chief complaint was chronic fatigue, Dr. Galland found that 61 patients were infected with giardia.⁴ His conclusion is that giardia may be an important cause of chronic fatigue syndrome.

Edited by k10, 31 March 2009 - 07:19 PM.

[FunkOdyssey]

Another reason to like empiric trials of therapy. I'm also encouraged by the fact that the tinidazole I'm using for the cystic form of Lyme takes out so many of these other unrelated bugs including giardia.

[k10]

Lufega: Also in another post you mentioned you had a deficiency in copper. See the attached document as it may be relevant to your situation.

Attached Files

•  Advances_in_CV_Cu_research_Klevay1.doc   86KB   47 downloads

Edited by k10, 31 March 2009 - 07:29 PM.

[k10]

If you're looking for a comprehensive treatment that should essentially get rid of all parasites, this is an excellent protocol that was posted on Curezone:

http://www.curezone....m.asp?i=1297663

[notlupus]

Thanks for the link!

I worked for a veterinarian while I was in high school and have been wondering if I could have picked up some sort of parasite there that's been making the lyme worse.

[FunkOdyssey]

From what I've read, disproportionate numbers of veterinarians contract Lyme due to their high risk of exposure, and many self-treat with the veterinary antibiotics they have access to.

[notlupus]

From what I've read, disproportionate numbers of veterinarians contract Lyme due to their high risk of exposure, and many self-treat with the veterinary antibiotics they have access to.

Yup, vets don't go to doctors. I think I got Lyme while walking a foster dog in the wooded area around my apartment, but I might have had intestinal parasites before that which might explain why one of the first symptoms was intestinal bloating and gluten intolerance if my intestines were already weakened. I've always been able to eat junk food and not get fat, also pointing to intestinal parasites as a possibility. When I was having my thyroid problems I only gained maybe 5lbs, and I've been unable to exercise for years and haven't gained hardly any weight.

I'm also considering switching to a 50/50 pen procaine/benzathine every 48h, continuing the probenecid, and adding diflucan. My brain is such much I never remember to take the antibiotics when I am supposed to. :(

I'm going to order some diflucan from United pharmacies unless I get a better suggestion. The price is good and many here seem to have had good experiences when they were still shipping modafinil to the US. http://www.unitedpha...p...at=0&page=1

Edited by notlupus, 31 March 2009 - 09:09 PM.

[Lufega]

k10,

Thank you for all that information. It's refreshing to read about something different, for a change. If it's not Lyme, then I was out of ideas and potential differentials but this seems like an avenue I will explore further. It's interesting that in mentions lactose intolerance as result of giardia infection. I became lactose intolerance at around the same time all the other symptoms started. There's more to this than meets the eye.

I also received new lab work. HGH, testosterone and alpha-1-antitrypsin are dangerously deficient but IGF-1 is normal. Also, lipoprotein (a) is high. That confirms it, I'm a girly man, ya.

[FunkOdyssey]

Giardia should have responded to metronidazole though.

[nameless]

I also received new lab work. HGH, testosterone and alpha-1-antitrypsin are dangerously deficient but IGF-1 is normal. Also, lipoprotein (a) is high. That confirms it, I'm a girly man, ya.

Make sure none of your supplements could be affecting any of those things, like testosterone. I've read Lp(a) can be a pain to bring down, so hopefully it's not super high. I think fish oil + C + some of those Pauling amino acids (lysine/proline) might help a little there. Or the Lp(a) might be high due to your hormone deficiencies?

How did your BMP, echo and heart tests come out?

[nameless]

I got my own blood test results in today, and am hoping someone here can shed a little light on them.
My CBC & CMP are normal. I had a tick-borne Ab Panel that reads:

Ehrlicia Chaffeensis (HME) Ab, IgG 1:128 titer <1:64
Anaplasma phagocytophilium Ab, IgG and babesia IgG Ab both came back <1:64.

My doctor also tacked on a testosterone and DHEA, due to a previous high DHEA-S, but I'm not sure what these results mean exactly:

Testosterone Free: 18.9 (9-30)
Testosterone Total: 484 (240-950)
Dehydroepiaandrosterone 7.7 (0-7.9)

Two weeks earlier I had a DHEA-S, that came back high:
DHEA-S 430 (48-244)

And oddly, the lab didn't run a Western Blot on me, even though I know for a fact it was on the script. They instead gave me an Elisa, which came back negative (as they usually do). I feel like I'm in the twilight zone of lab testing, where it's impossible to get a WB done.

Anyway... for the Ehrlicia, how reliable is that test? Is it a definite positive for past exposure? And for Babesia and Anaplasma, are they both definite negatives?

For DHEA-S, is DHEA the equivalent, or should she have run a DHEA-S again? And does it matter that I took this blood test in the afternoon, as I thought most hormone stuff should be done in the morning? At the time I didn't know she was going to include testosterone + DHEA, as she just added it later by calling them.

Edited by nameless, 01 April 2009 - 06:09 PM.

[k10]

* DHEA-S is essentially a precursor to DHEA, DHEA-S is stored/inactive in the body, and DHEA is the free and active form of the hormone. DHEA-S is fairly stable throughout the day so it shouldn't matter what time of the day you had it tested, DHEA is the one that fluctuates.

* The ehrlichia test should be fairly accurate, all it is showing there is past exposure. It is possible that it could cross-react with some other bacteria, though I would be fairly confident that it is a fairly certain positive for past exposure

* If you want a WB done, just e-mail Igenex at their website Igenex.com requesting a testing kit, and get the WB through them. They'll send you a testing kit for free.

* There are different species of babesia, so just because that was negative doesn't mean much. They just checked for a single species of babesia. I would get a complete coinfection panel done through Igenex if you can afford it, or if your insurance covers it.

I had a high DHEA and my naturopathic doctor said it is because my adrenals are struggling, so I'm assuming DHEA can rise if there is some sort of active infection going on in the body as DHEA has an effect on the immune system.

[FunkOdyssey]

Its probably for the best that you have not had a western blot performed yet. If it isn't performed by Igenex its often a waste of time.

[nameless]

Thanks for the replies. I was hoping the tests would definitely rule out Babesia, and maybe not be definite for Ehrlicia or tick exposure, but I guess not.

I'm also not sure if the high DHEA-S signifies anything, or if it does, why my family doctor didn't repeat it too. Then again, she tends to get confused easily.

I plan to make an appointment with that ILADS doc I mentioned, so he should know what other tests to run, including Igenex stuff. I'm hoping I can get by with just the WB through Igenex, as my insurance won't pay for it. As for the co-infections, etc. I'm hoping regular labs will do, as my insurance will pay for tests through their accepted labs (Labcorp, Enzo, Sunrise, + some local hospitals).

I just need to send that doc a copy of my past labs, plus symptoms, before he even accepts patients. Guess I'll include the high DHEA-S too, and past high liver enymes, as maybe they are clues to something.

[FunkOdyssey]

Have Labcorp do the CD-57 Natural Killer panel if your insurance pays for labcorp tests.

[nameless]

Have Labcorp do the CD-57 Natural Killer panel if your insurance pays for labcorp tests.

Okay, I'll ask for that one. Anything else recommended? I wanted to get a tick-borne DNA panel too (PCR), but I'm not sure how accurate it is. A local hospital does that one and insurance pays for it, so I figure, why not?

I just need to convince a doc to write scripts for whatever bloodwork I should get. If that ILADS guy is decent, he should know without me mentioning them.

[notlupus]

Have any of you joined ILADS and do you think it was worth it? I'm considering paying the $100membership fee just to get the member directory.

[notlupus]

It's official, I need a break from MDs.

I'm ordering the diflucan tonight, and tomorrow I pick up combi-pen from tractor supply. I'm going to start taking cinnamon until the diflucan gets here.

[nameless]

It's official, I need a break from MDs.

I'm ordering the diflucan tonight, and tomorrow I pick up combi-pen from tractor supply. I'm going to start taking cinnamon until the diflucan gets here.

What does cinnamon do? Well, besides flavor foods... *feels like eating cinnamon now*

[notlupus]

It's official, I need a break from MDs.

I'm ordering the diflucan tonight, and tomorrow I pick up combi-pen from tractor supply. I'm going to start taking cinnamon until the diflucan gets here.

What does cinnamon do? Well, besides flavor foods... *feels like eating cinnamon now*

It also helps with candida. Oregano might have been the better choice, but I got the cinnamon cheap enough I can take more of it so it'll end up being as effective as oregano. It also helps with blood glucose, and since I have a mild case of reactive hypoglycemia it can't hurt. I can send you the full journal article if you want, just PM me your email addy.

http://www.ncbi.nlm....pubmed/18997851

Edited by notlupus, 04 April 2009 - 02:05 AM.

[nameless]

It also helps with candida. Oregano might have been the better choice, but I got the cinnamon cheap enough I can take more of it so it'll end up being as effective as oregano. It also helps with blood glucose, and since I have a mild case of reactive hypoglycemia it can't hurt. I can send you the full journal article if you want, just PM me your email addy.

http://www.ncbi.nlm....pubmed/18997851

Thanks for the info. I tried cinnamon around a year or so ago for reducing triglycerides, but it didn't do much there. But my glucose levels are pretty normal, so maybe it only works on people with glycemic issues. I tried New Chapter's cinnamon gels back then, but now just use cinnamon as a food when I eat oat bran. Even if it doesn't do anything health-wise for me, at least it's pretty tasty.

[k10]

Babesia is a bitch. I woke up with a temperature of 34.6 celcius, and was burning hot despite my very low body temperature.

Edited by k10, 04 April 2009 - 05:09 AM.

[notlupus]

Babesia is a bitch. I woke up with a temperature of 34.6 celcius, and was burning hot despite my very low body temperature.

I hate that. And if it happens when you go to the doctor, of course they think it's hypochondria. I have the opposite problem, Even if I'm hot my skin feels cold, so most of the time I've got a jacket on and I'm sweating but otherwise I get goosebumps and start shivering. Strange how most people find it amusing that if I wear shorts in the summer and go into an air conditioned building I start shivering.