I saw an endocrinologist yesterday and they could do nothing for me but felt, due to my symptoms in the hand and feet, and other symptoms, that I could have vasculitis. There is a theory that this is caused by an infection. Gee, isn't that interesting! Anyway, anyone have vasculitis type symptoms?
My meeting with the doc also had me thinking about white blood cells. Someone mentioned if I had a MRSA infection from my elbow surgery, I would have raised white blood cells. Would the same hold true for Lyme? I say that because my white cells are not elevated.
Thanks!
Posted by disturbedme (Member # 12346) on :
richedie, are your white blood cells low?
Posted by lymebytes (Member # 11830) on :
Burrascano has said Lyme is a "vasculitis" disease. A SPECT Scan I believe can determine this (but not 100% sure).
Some report afer having surgery an increase in symptoms of LD and if they used steroids after surgery, which they usually do, you can experience a increase of symptoms due to that as well.
Surgery in fact, is one of many "triggers" of LD.
Take care.
Posted by cantgiveupyet (Member # 8165) on :
WBC are usually low with lyme. It really out smarts the immune system.
Posted by njlymemom (Member # 15088) on :
i have vasculitis and encephalitis from lyme
spect scan showed this
Posted by richedie (Member # 14689) on :
I think when I had my counts checked in January, they were 4.8, so I am not sure but I think that is a touch low but still in range.
Hopefully my LD will look at these things.
INteresting, because two weeks after my ulnar entrapment surgery, my feet started bothering me and it all started from there. Prior to the surgery though, I had no symptoms. Maybe a coincidence or the surgery compromised my immune system enough.
Posted by disturbedme (Member # 12346) on :
4.8 sounds low normal to me, but of course all labs have different ranges.
My WBC counts are usually as low as being in the 2.1 - 2.9 range. Too low! Posted by richedie (Member # 14689) on :
So Lyme is a "vasculitis" disease/ What about the other issues like neuropathies, etc?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by richedie: So Lyme is a "vasculitis" disease/ What about the other issues like neuropathies, etc?
Lyme can cause neuropathy. Is that what you're asking?
Posted by richedie (Member # 14689) on :
Well, I saw my Lyme doctor last night and he upped the Fluconazole to 100 mg a day and also added a medication for my weak thyroid, all of which could help me feel better. He said he would give me abx if I wanted, but he said he has been treating for 10 years and this Fluconazole treatment has been the best he has found because it introduces less in the way of meds such as abx unless absolutely necessary. I think he follows more to Dr. S (Lyme doc and researcher from Germany?) than Dr. B in NY. He doesn't seem to agree a lot with Dr. B. ideas.
He said, even with the abx you can't ever fully eradicate the bacteria, only knock me down so to speak and when you stop the abx, symptoms will return. I am confused but I get hopeful everytime I see a doc for somereason.
He still wants me to follow no fruit, sugar, simple carbs, no wheat, refined carbs, eat mostly lean chicken, eggs, fish, lots of veggies, and try to avoid all grains, rice, legumes, etc. I can eat thinigs like bucwheat it appears. Since the bacteria is a simple organism it needs to be startved to help get under control and weaken.
Posted by ssmillik (Member # 9635) on :
I'm a bit unexperienced on this site and so I don't know a lot, but it sounds like they're treating you for Candidiasis, not Lyme! Is this doctor a LLMD? I don't know that a regular endocrinologist would really know how to treat for Lyme.
By the way, when I went to my first regular doctor (not LLMD), under the glaring office lights, you could see every vein and blood vessel in my body while hers were nonexistent. She just said, "huh", and then dismissed it.
Posted by cantgiveupyet (Member # 8165) on :
Rich,
It may temporarily help somewhat getting any yeast that you have and sometimes it will hit lyme.
Im hopeful your appt next month will be good for you.
He is right though the bugs stay with us, and we need a strong immune system to ward them off...but we need to also knock the infections down.
Right now it appears from testing my immune system is so busy with the lyme, it isnt seeing the babs and bart, meanwhile they continue to go stealth and suppress my immune system.
Hang in there.
Posted by Lymetoo (Member # 743) on :
Very strange. Yes, it's good that he's helping you attack the Candida you might have... and the diet is good.
But if you have Lyme, you'll need far more than that in my opinion. It won't go away on its own.
Posted by Keebler (Member # 12673) on :
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Rich,
Quinoa, especially RED quinoa which does not require rinsing before cooking is a wonderful whole grain that has a perfect amino acid profile. You'd still want small to modest amounts, though and to eat with other foods.
In addition to of cooked buckwheat, you might enjoy quinoa.
You can google it. there is even a quinoa (keen-wa) association. You must rinse the lighter quinao in a very fine meshed strainer prior to cooking.
For breakfast, you can add cinnamon and soy/rice/almond milk and stevia (the clear stevia drops have less aftertaste). I also add frozen organic blueberries or raspberries (both are very low sugar and excellent antioxidants).
With lunch, you can add in with lentils and season any which way. As a side dish, you can add curry or thyme (or my favorite, herbs de Provence). Having a good kitchen herb collection can add enjoyment and variety. Indian spices are very nice in that you can vary the heat.
Back to quinoa - it cooks very fast. If you are boiling some chicken soup, you can add a small amount toward the end to thicken it up.
And, for the run, there are quinoa flakes - mix with hot water.
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There has been a passing mention of Diflucan having anti-spirochetal properties.
I will look around my computer files as I think I looked into that protocol some time back.
There are two different ones. One does it for 25 days, the other for 50 days . . . one follows with a type of penicillin.
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Posted by Keebler (Member # 12673) on :
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2004 abstract & 2005 interview with German physician Fritz Schardt.
Eleven patients with neuro-borreliosis had been treated with 200 mg fluconazole daily for 25 days after an unsuccessful therapy with antibiotics.
At the end of treatment eight patients had no borreliosis symptoms and remained free of relapse in a follow-up examination one year later.
In the remaining four patients, symptoms were considerably improved. At the end of therapy immune reactivity (IgM+) disappeared in three patients.
Since borrelia spp. are almost exclusively localised intracellular, they may depend on certain metabolites of their eucaryotic host cell. Inhibition of P450 and other cytochromes by fluconazole may incapacitate Borrelia upon longterm exposure.
In May of this year I sat down at the beautiful Essex House on Central Park South, with a German physician specializing in internal medicine, Fritz Schardt.
Dr. Schardt, who is associated with the University of Wurzburg in Germany, published an interesting pilot study in the European Journal of Medical Research in July of 2004 (on)
on the use of an antifungal drug, fluconazole (diflucan), in treating chronic, advanced lyme disease.
This pilot study examined 11 patients with chronic lyme. Dr. Schardt has slowly refined the protocol since then, and believes it holds great promise in treating this difficult condition--which is often misdiagnosed as chronic fatigue or fibromyalgia.
Here follows our interview:
Jill Neimark (JN): What made you think of using diflucan, an antifungal, to treat lyme disease?
Dr. Fritz Schardt (FS): I was actually my first patient.
I got lyme disease in 1989, and was given two weeks of doxycycline. Our country follows the protocols set by yours, so that's what is generally recommended.
I now know that was very inadequate and I do not think doxycycline should be used in early lyme disease at all. It is only bacteriostatic, meaning it inhibits the bacteria but does not kill them.
JN: I know, the same thing happened to me. At the doses they recommend, it also does not penetrate the central nervous system. I had a fever, stiff neck and bullseye rash. The stiff neck means it was already in my nervous system.
Therefore I probably needed six to eight weeks of doxycycline at double the dose I was given. Higher doses will penetrate the CNS.
FS: Right. I recommend penicillin in early lyme disease.
JN: Amoxicillin is given here. Is that what you recommend?
FS: No, that's broad spectrum, so you end up killing many bacteria, including necessary ones in your gut. I recommend smaller spectrum penicillins.
The syphilis spirochete has not become resistant to penicillin, and there's good evidence that borrelia, the lyme spirochete, has not either.
In Germany, we have cefalosporine, roxithromycin, cotrim-TMPO, and clarithromycin. These are all good choices. They should still be taken for 20-30 days.
JN: Okay, well, you took doxycycline so you ended up with chronic lyme disease. What happened then?
FS: I was sick for 18 months. I was given intravenous rocephin several times. I would feel better, but then once I stopped taking the antibiotics, I relapsed. I was often bedridden and I thought I was ready for the wheelchair.
Then, I developed a fungal infection, possibly because of all the antibiotics. So I was put on diflucan. This was around 1990. It was a new drug that was being used mainly for opportunistic fungal infections in AIDS patients.
JN: And what happened?
FS: I got better. But I only stayed on it for two weeks at first, and then I got worse again. So I went back on it for 30 days, and I got well.
JN: What was the dose?
FS: I took 100 milligrams twice a day.
JN: Are you completely well?
FS: I am very active and energetic and I feel quite well. I have since competed in athletic events and won them. However, I do have an occasional heart arrhythmia that I believe may be due to permanent damage from the spirochete.
JN: Tell me your reasoning as to why diflucan might work in chronic lyme.
FS: There are several reasons. First of all, it inhibits an enzyme called cytochrome P450. This is an enzyme that your liver, for instance, uses to detoxify chemicals and drugs.
Borrelia has a very primitive p450 defense, so if you inhibit it, it is easily weakened.
Therefore I believe that diflucan inhibits the growth and replication of borrelia. It does not necessarily kill it. In addition, it penetrates well into the cells and into the nervous system and brain, where borrelia may hide.
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JN: What is your current protocol? (asked in 2005)
FS: I recommend 200 milligrams a day, for 50 days. There are now 200 milligram pills available, so once a day is fine.
Then I recommend 20-30 days of any of the penicillins I mentioned.
** You may have to go through several cycles of this protocol.
You must also be very aware of other drugs that act on the p450 enzyme system, specifically a subset that inhibits CYP3A4.
You should not be taking any of these drugs at the same time as you take diflucan.
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JN: What are some of these drugs?
FS: There are many, and it's best to check with your doctor. Some common ones are erythromycin, amitryptylin, midazolam, Lovastatin, and others.
JN: I hate antibiotics. Do you have to take the penicillin?
FS: I understand, many lyme patients come to hate antibiotics because they have to take so many of them for so many years and are still ill. In fact, I also was made ill by the antibiotics.
JN: They really disrupt your digestion.
FS: Right, that was my problem.
JN: So, this protocol is your best one-two punch against borrelia, but you don't have to take the antibiotics if you truly hate them.
FS: Right. In addition, diflucan has a slow half-life so it can slowly build up in your bloodstream. Sometimes patients call me after a few weeks and say they are feeling very ill on the protocol. Perhaps it's a herxheimer, or perhaps it's that the levels of diflucan are higher than they can tolerate. So I say, take a 3 or 4 day pause, and then go back on the protocol. This is perfectly acceptable.
JN: What happens if you have a weak p450 system? Have any of your patients have raised liver enzymes from the diflucan?
FS: I have been lucky, not one of my patients have had raised enzymes. It is generally well tolerated. If it is a problem, however, you can lower the dose of diflucan. This would be overseen by your doctor. I recommend 100 milligrams in pediatric cases.
JN: How many patients have you treated now?
FS: At least eighty. JN: What is the most difficult case you've had?
FS: I have one 75-year-old patient who has had lyme for 18 years. He was very ill. He has had to do this cycle of diflucan and penicillin 3 times. He is much, much better. In fact, he's so happy with his improvement he called the drug manufacturer to tell them they need to run a publicity campaign to promote diflucan for chronic lyme disease.
JN: Some patients on some internet groups are adapting your protocol, probably in concert with their doctors, and I'd like to know what you think of this. They are suggesting staying on diflucan for 9 months, and some of them are adding in low-dose minocycline. Are you aware of this?
FS: No, I am not aware of this.
JN: What do you think of the idea?
FS: I believe in the narrow-spectrum penicillins for borrelia, not the cyclines.
JN: What about 9 months?
FS: That remains to be seen.
** Perhaps, like tuberculosis, some patients will need to be on diflucan at least six months or more. Borrelia is a very sophisticated organism, and one of the few bacterium with two cell membranes. There is much we still have to learn about it.
It would be good to hear if anyone has particular follow-ups to this.
and a note about his reportedly saying that cytochrome P-450 is an enzyme. I think something got lost in the translation. I think he either said, or meant to say, of the C P-450, a "pathway where enzymes are created" - not an enzyme itself.
One of the major detox pathways in the liver is the C P-450 pathway. The liver makes many enzymes that are supposed to help that pathway metabolize the certain classifications of foods, medicines and environmental toxins.
In some people that system does not work well and the specific enzymes are deficient or missing altogether (usually from a genetic porphyria).
This is quite extensive but I have to stop there.
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Posted by skigal (Member # 7443) on :
richedie -
Just wondering, Is your llmd Dr F in Kennett Square?
Posted by randibear (Member # 11290) on :
i thought you had to treat lyme and candida separately.....
Posted by richedie (Member # 14689) on :
quote:Originally posted by skigal: richedie -
Just wondering, Is your llmd Dr F in Kennett Square?
Yes, Dr. F. He says the Fluconazole will treat the Lyme, coinfections and candida if I have a problem with that. Not sure.
It is confusing becaus ehe says I may have to avoid fruit much of my life now with a cheat here and there. However, I read the Ecology Diet book concerning Candidiasis and she says after months you can start adding back fruit as long as you eat the fruit alone.
Posted by cantgiveupyet (Member # 8165) on :
rich- i think everyone is so different on what they can add back in. I avoid all fruit.
I was able to add in milkshakes and bread once a week, without getting stiff, but i think it flared the candida a tad. But, there was a time any carbs would send me to bed for a week!!!
Do fruits bother you now?
Posted by richedie (Member # 14689) on :
How would I know if fruits bother me? Remember I am not on abx...yet. I mean, I eat can eat anything and don't notice any pattern at all!
Posted by Lymetoo (Member # 743) on :
My only concern here is that if Diflucan cured lyme, babesia and candida, we'd all be taking only that!
I think it HELPS Lyme and candida, but that's it.
Posted by cantgiveupyet (Member # 8165) on :
if your symptoms increase after eating fruits that could be a sign they are bothering you.
I notice when sugar bothers me, i either get very stiff, numbness or tired.
Posted by richedie (Member # 14689) on :
Iuch difference with foods. Remember I am not taking abx, so isn't that a big issue? Maybe I just don't have much of anissue with candida, etc
The diet thing is confusing in general!
Dr. B's guidelines say a low carb diet is best and certain fruits should be avoided but is he only talking about with taking abx? His also says decaf coffee and tea is fine!
Then I have an anti allergen/ anti yeast diet given to me to follow while taking Fluconazole...but it includes rice as being okay! Rice is a starch so that is confusing. All of these candida and yeast diets include different foods so it doesn't seem very scientific. They also mostly say NO coffee and tea, even decaf although Dr. B says yes. Ugh.
I was a vegetarian for years, eating lots of whole grains, sprouted grains, breads, whole grain cereals, fruits, veggies, beans, brown rice, soy, you name it and never had any issues with candida and I know these foods, especially the veggies are considered to create prebiotics. It is mostly the refinced junk, flour, etc that cause problems. I just don't thikn fruit is that big an issue since it has the enzymes for proper digestion.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by randibear: i thought you had to treat lyme and candida separately.....
If so, I'd probably be dead by now!
Rich.. Maybe you don't have a yeast issue. I continue to battle it even though I'm not on abx. I took abx for 4 yrs for Lyme.
I treated yeast the entire time and followed a good diet.
I don't do rice, but some are able to get away with it. At least they THINK they can! Make sure it's brown rice, not white.
Posted by richedie (Member # 14689) on :
So where do you get your carbs other than veggies? I know I feel slow and sluggish unless I have a good amount of carbs through the days. I always have been that way.
Posted by richedie (Member # 14689) on :
I was thinking of trying the Body Ecology Diet or No Starch diet for a few weeks to see how I feel.
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