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Allimed - Anyone with LD try it?
First, to WAF - I found your story very helpful. You confirmed that an infectious disease doctor (IFD) aren't typically knowledgable in LD. I saw one last week, after receiving a CD-57 count of 19, and not only did he not know what this test was, he went on to advise me to try a phychiatrist since I haven't been able to find a diagnosis yet. I've heard that a couple of times before, during my five year quest of trying to find out why I keep getting sicker, so I knew to let what he said go in one ear and out the other. It's nice, though, to have my hunch confirmed by you about IFDs. Oh, and by the way, the doctor was sure I didn't have LD because my WesternBlot was negative. From what I've been reading lately, this doctor sure isn't doing his homework!
Has anyone out there with LD tried using Allimed? I read about a recent study done in London that showed some success on LD patients. I ordered it to try because, when I'm sure you can all relate, when you are so sick you'll try just about anything. And besides that, getting in to see a LDLD is going to take weeks, and I'm too sick to just sit around and try nothing.
Has anyone out there with LD tried using Allimed? I read about a recent study done in London that showed some success on LD patients. I ordered it to try because, when I'm sure you can all relate, when you are so sick you'll try just about anything. And besides that, getting in to see a LDLD is going to take weeks, and I'm too sick to just sit around and try nothing.
Hiya,
Have you started taking the allimed yet? How are you getting on with it?
Have you started taking the allimed yet? How are you getting on with it?
Welcome --
Not sure about the medically correct answer about the spinal tap results, but from what I have read, spinal taps are not particular useful in diagnosing Lyme (but are sometimes done to rule out other possible infections), so I wouldn't stress tooooo much about it, but that it did show a positive result is interesting. Many people with a major case of Lyme will show nothing on a spinal tap test result.
If the doc's office doesn't have the detailed results, then I'd call the lab and ask for them to be sent. If they won't send them to you (I don't know if they can refuse or not), then tell them to send the detailed report to your doc and then follow up with your docs office to send you a copy.
I attitude is: they're my tests, I paid for them, now gimme my copy!!
Not sure about the medically correct answer about the spinal tap results, but from what I have read, spinal taps are not particular useful in diagnosing Lyme (but are sometimes done to rule out other possible infections), so I wouldn't stress tooooo much about it, but that it did show a positive result is interesting. Many people with a major case of Lyme will show nothing on a spinal tap test result.
If the doc's office doesn't have the detailed results, then I'd call the lab and ask for them to be sent. If they won't send them to you (I don't know if they can refuse or not), then tell them to send the detailed report to your doc and then follow up with your docs office to send you a copy.
I attitude is: they're my tests, I paid for them, now gimme my copy!!
I was given 2 abx before taking urine test to send to Igenex one was strong dose for 5 days prior to test and had positve result not sure exactly what it shows just told positive for Lyme bacteria I have unfortunately took year off after searching for new LLMD only to suffer but def as far as I know taking abx in before testing is to produce the bacteria and bring it out from hiding, does anyone know on spinal tap if u have had positive o-bands did they show the #'s or just say presEnt like mine wondering how to obtain this info and why it wasn't included.... Thanks
To clarify... If you are already on abx, I would definitely stay on them until you have spoken to a doctor.
And yes, patients whose testing shows no Borrelia antibodies may be put on an antibiotic challenge and then retested.
The new culture test requires a patient to be antibiotic free for a month before the blood draw.
Sorry I wasn't more clear. Your best bet would be to call the doctor you have an appointment with and ask what they might recommend while you're waiting for your appointment.
And yes, patients whose testing shows no Borrelia antibodies may be put on an antibiotic challenge and then retested.
The new culture test requires a patient to be antibiotic free for a month before the blood draw.
Sorry I wasn't more clear. Your best bet would be to call the doctor you have an appointment with and ask what they might recommend while you're waiting for your appointment.
Above and also in a previous post you say: "If you're planning to get tested again, you'll want to avoid antibiotics and anti bacterial supplements in signicant quantities. It could make it more likely you'll test negative."
This runs counter to my understanding that LLMDs will sometimes give a short course of antibiotics before re-running W.blot / ELISA tests on a patient who has already tested negative on those tests, because doing so will 'stir up' the immune system to manufacture antibodies and disperse them into the bloodstream, which will then show up positive on blood tests, aka 'seroconversion'
Here is some obliquely relevant language from 2009, posted on blogspot by LymeMD, who is a Lyme doc working incognito on the Eastern seaboard:
"I have found no literature which discusses the issue of Lyme seroconversion. This phenomenon is well known to physicians who treat Lyme disease. It is not discussed by the CDC or in IDSA guidelines. The CDC still maintains that a positive test is based on the two tier test or now- a Western blot showing 5/10 IgG WB bands.
"Those of us who treat chronic Lyme know three things: [1] The two tier test is inaccurate, [2] A direct Western Blot which incorporates IgG is unhelpful since the vast majority of seropositive patients have IgM responses only and many patients who test positive for Lyme only do so after Herx responses folowing antibiotic therapy. [3] The IDSA does not address the existence of Lyme related Herx responses.
"IDSA physicians I have spoken with claim that seroconversion has no meaning; they believe it represents a false positive response. It is also trying (to say the least) that the CDC has failed to inform laboratories and physicians what a positive Lyme CDC test means -- despite congressional instruction to do so in 2002 -- signed into law by President Bush.
"At the present time, every mainstream infectious disease specialist, neurologist and rheumatologist I interact with has mistaken beliefs about the meaning and use of this test. Furthermore, they believe that my interpretations of Lyme tests are tantamount to quackery."
[end of quote from LymeMD]
Rico, how does this fit with your admonition to *avoid* antibiotics before testing? I have not read that anywhere, and especially I would NOT stop taking abx prior to testing unless the LLMD specifically instructs to do so.
This runs counter to my understanding that LLMDs will sometimes give a short course of antibiotics before re-running W.blot / ELISA tests on a patient who has already tested negative on those tests, because doing so will 'stir up' the immune system to manufacture antibodies and disperse them into the bloodstream, which will then show up positive on blood tests, aka 'seroconversion'
Here is some obliquely relevant language from 2009, posted on blogspot by LymeMD, who is a Lyme doc working incognito on the Eastern seaboard:
"I have found no literature which discusses the issue of Lyme seroconversion. This phenomenon is well known to physicians who treat Lyme disease. It is not discussed by the CDC or in IDSA guidelines. The CDC still maintains that a positive test is based on the two tier test or now- a Western blot showing 5/10 IgG WB bands.
"Those of us who treat chronic Lyme know three things: [1] The two tier test is inaccurate, [2] A direct Western Blot which incorporates IgG is unhelpful since the vast majority of seropositive patients have IgM responses only and many patients who test positive for Lyme only do so after Herx responses folowing antibiotic therapy. [3] The IDSA does not address the existence of Lyme related Herx responses.
"IDSA physicians I have spoken with claim that seroconversion has no meaning; they believe it represents a false positive response. It is also trying (to say the least) that the CDC has failed to inform laboratories and physicians what a positive Lyme CDC test means -- despite congressional instruction to do so in 2002 -- signed into law by President Bush.
"At the present time, every mainstream infectious disease specialist, neurologist and rheumatologist I interact with has mistaken beliefs about the meaning and use of this test. Furthermore, they believe that my interpretations of Lyme tests are tantamount to quackery."
[end of quote from LymeMD]
Rico, how does this fit with your admonition to *avoid* antibiotics before testing? I have not read that anywhere, and especially I would NOT stop taking abx prior to testing unless the LLMD specifically instructs to do so.
Sorry to hear about your illness. Welcome to the forum! Your experience is quite common. It was 6 years total and 12 doctors before I got diagnosed, although my chronic and progressively worsening part was just the last 16 months.
I was referred to an ID doc twice and decided not to go based on all the stories I had heard. I was in the hospital with severe abdominal pain and the ID doc there wouldn't even come see me because he was sure I did not have Lyme. (I had tested negative on a blood screening test and in my spinal fluid.). I later tested positive at IGeneX, although still CDC negative.
If you're planning to get tested again, you'll want to avoid antibiotics and anti bacterial supplements in signicant quantities. It could make it more likely you'll test negative. Are you waiting to see a local doc? You could ask to be on their cancellation list to hopefully get in earlier.
While I haven't heard of Allimed, the latest supplements I have heard about that are effective against Lyme are Banderol and Samento (Cat's Claw). I have digestive issues and Intestimax helped me. I am also taking Meriva Curcumin, but I don't know if it's having a direct effect or not. It has antiinflammatory properties and I read that cultures with the most curcumin in their diets have less alzheimers. I figure my brain could use all the help it can get, so I am going to use this one for a while. ;)
Going gluten free definitely helped, both with my Intestinal discomfort and with fatigue/brain fog.
I was referred to an ID doc twice and decided not to go based on all the stories I had heard. I was in the hospital with severe abdominal pain and the ID doc there wouldn't even come see me because he was sure I did not have Lyme. (I had tested negative on a blood screening test and in my spinal fluid.). I later tested positive at IGeneX, although still CDC negative.
If you're planning to get tested again, you'll want to avoid antibiotics and anti bacterial supplements in signicant quantities. It could make it more likely you'll test negative. Are you waiting to see a local doc? You could ask to be on their cancellation list to hopefully get in earlier.
While I haven't heard of Allimed, the latest supplements I have heard about that are effective against Lyme are Banderol and Samento (Cat's Claw). I have digestive issues and Intestimax helped me. I am also taking Meriva Curcumin, but I don't know if it's having a direct effect or not. It has antiinflammatory properties and I read that cultures with the most curcumin in their diets have less alzheimers. I figure my brain could use all the help it can get, so I am going to use this one for a while. ;)
Going gluten free definitely helped, both with my Intestinal discomfort and with fatigue/brain fog.
I am on antibiotics along with a large number of natural supplements and vitamins. I really believe in them also. I have not heard of Allimed but I think these natural supplements can't do any harm if taken as directed.
When I read your story and you mentioned your doctor wanting you to see a psychiatrist, it made me cringe since this is the way the non- LLMD's deal with you when they don't know what is wrong and I am so sorry that you had to deal with that. I would try another doctor if possible and you have us here on the Lyme group and although we are not doctors we can help with different concerns. Please let us know how you are doing. Good luck.
When I read your story and you mentioned your doctor wanting you to see a psychiatrist, it made me cringe since this is the way the non- LLMD's deal with you when they don't know what is wrong and I am so sorry that you had to deal with that. I would try another doctor if possible and you have us here on the Lyme group and although we are not doctors we can help with different concerns. Please let us know how you are doing. Good luck.
Welcome to MedHelp Lyme --
I'm not familiar with Allimed -- their website looks like supplements etc, yes?
Lyme can do a real number on metabolism and body chemistry, so taking vitamins and supplements can for some (like me) help a great deal in getting well. But Allimed I'm not familiar with.
From the Allimed website, it appears that the active ingredient is allicin, which wiki says "is an organosulfur compound obtained from garlic."
Garlic has many helpful antibacterial etc. properties. I don't know that you can't get the same effect from trotting down to the grocery store and mashing up a few garlic cloves for a yummy dinner ... or even put them (raw) into capsules and take with food. I did that when I had a bad yeast infection, and it seemed to help.
Garlic is good stuff ... but I don't know what this company can or might do to improve on Mother Nature. fwiw.
I'm not familiar with Allimed -- their website looks like supplements etc, yes?
Lyme can do a real number on metabolism and body chemistry, so taking vitamins and supplements can for some (like me) help a great deal in getting well. But Allimed I'm not familiar with.
From the Allimed website, it appears that the active ingredient is allicin, which wiki says "is an organosulfur compound obtained from garlic."
Garlic has many helpful antibacterial etc. properties. I don't know that you can't get the same effect from trotting down to the grocery store and mashing up a few garlic cloves for a yummy dinner ... or even put them (raw) into capsules and take with food. I did that when I had a bad yeast infection, and it seemed to help.
Garlic is good stuff ... but I don't know what this company can or might do to improve on Mother Nature. fwiw.
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