Aa
If I only knew
Been on oral antibiotics for Lyme for about 8 months now. My Lyme has already been confirmed, so I know it's present. But I just don't understand. No obvious herxheimer. I am not feeling any improvement. And I have been on various antibiotics: Doxycycline, Zithromax, Ceftin, Biaxin, Cefdinir. Becoming a little concerned.
What oral antibiotics have you all responded to?? I'm sure everyone is different. Just curious.
I'd really appreciate any comments!
What oral antibiotics have you all responded to?? I'm sure everyone is different. Just curious.
I'd really appreciate any comments!
Hi everyone.
As the regulars here know, I don't frequent this part of the forum often,
but Ricobord's mention of Dr Shoemaker, reminded me of I recent interview
I read on a post form another forum, which I thought would be of special interest also to Lyme Disease and Co-infection sufferers.
"Here is some info about MSH that might be of interest. found on another group that was discussing mold illness/inflammation and it's effects.
If we have a low MSH, which a lot of us do, our Hypothalmus can really reek havok for us.
I found this.
Q What is MSH
A: MSH is an anti-inflammatory, regulatory hormone made in the hypothalamus. It controls production of hormones, modulates the immune system and controls nerve function, too. It is made when leptin is able to activate its receptor in the proopio-melanocortin (POMC) pathway. If the receptor is damaged by peripheral immune effects, such as the release of too many pro- inflammatory cytokines, like with Mast Cell Activation Disorder (MCAD), then the receptor doesn't work right and MSH isn't made. Leptin controls storage of fatty acids as fat, so MSH and leptin are a major source of interest.
Q: What does MSH do?
A: MSH sits as the central hub of a series of important effects. MSH controls hypothalamic production of melatonin and endorphins. Without MSH, deficiency creates chronic non-restful sleep and chronic increased perception of pain, respectively. MSH deficiency causes chronic fatigue and chronic pain. MSH also controls many protective effects in the skin, gut and mucus membranes of the nose and lung. It also controls the peripheral release of cytokines; when there isn't enough MSH, the peripheral inflammatory effects are multiplied. MSH also controls pituitary function, with 60% of MSH deficient patients not having enough antidiuretic hormone. These patients will be thirsty all the time, urinate frequently and often will have unusual sensitivity to static electrical shocks. 40% of MSH deficient patients won't regulate male hormone production and another 40% won't regulate pro- per control of ACTH and cortisol.
Q: What illnesses are associated with MSH deficiency?
A: Any illness that begins with excessive production of pro- inflammatory cytokines will usually cause MSH deficiency. This is the basic mechanism that underlies damage caused by exposure to biologically produced toxins neurotoxins (biotoxins) made by invertebrate organisms, including fungi (molds), dino- flagellates (ciguatera and Pfiesteria), spirochetes (Lyme disease), blue-green algae (Cylindrospermopsis in Florida and Microcystis all over the world) and bacteria, like anthrax. Nearly 100% of the patients who have Chronic Fatigue Syndrome (CFS) will have MSH deficiency. Do we know that all CFS is due to biotoxins? No.
Q: OK, if something is going on in the body that causes inflammation, like exposure to toxins made by mold in Sick Building Syndrome, and the immune system is cranking out these proteins, cytokines, that are great for our health when they are released in the right amount at the right time, but harmful when too many are made at the wrong time, why don't we just fix the cytokine response and watch MSH get going again?
A: Good question. We are looking at an incredibly small area in the hypothalamus, one in which there is a real risk of permanent damage from cytokines to blood flow to this pathway. And who is to say that the vital receptors aren't destroyed by too much attack for too long? Once MSH production is damaged too much, it is too late.
Q: So, if the toxin and cytokine illness goes undiagnosed, or someone says the illness doesn't exist, like what we have seen for a long time with mold and in Lyme disease, there are going to be people whose MSH supply just dwindles down to nothing.
A: Right. These patients are miserable. They live, but there is no life. They are given Oxycontin or Neurontin or Elavil or Xanax, for example, but nothing really helps. Families are destroyed, careers are ruined, financial resources are poured into tests that mean nothing and therapies that hopefully won't cause harm, because they never help. Even worse, because MSH levels are rarely measured, many doctors look at the MSH deficient patients as if they are making up the illness, making up the pain to get drugs or looking for disability. And lots of them end up on disability, costing our society not just the unnecessary expense but also costing us the lost productivity.
Q: What is the answer for those people who are MSH deficient? Why don't we just give them MSH? It should be so simple, like giving insulin to a diabetic who needs it, right?
A: Should be, but it isn't. The FDA is real particular about giving potent hormones like MSH to just anybody. Just look at cortisone. A little bit is necessary for life, but too much will kill you. MSH can't be given to people until animal toxicity studies are done, showing safety, and that costs a lot of money, even if the paper work can be done.
Q: Why don't all the big drug companies jump on this? If what you are telling me is that there are a large number of people who will need daily replacement of MSH, and by the way, it looks like our supply of Sick Buildings that will generate MSH deficient patients won't dry up any time soon, then there should be a huge market for somebody.
A: No doubt about that. There are companies looking at MSH as we speak for weight loss, skin pigment changes and as an antidepressant, but no one is looking at MSH in chronic, fatiguing illnesses.
Q: So, if you can raise the money to prove MSH is safe, then what?
A: Researchers at the NIH, like Dr. Robert Star, would likely be willing to help with the experiments in humans. I'm sure there are other academic researchers who would come forward, but the problem is that the experience of physicians with MSH is so limited. Certain researchers like Dr. James Lipton of Zengen and Dr. Star, who know MSH, know what a huge area of medicine is involved with MSH. But the average endocrinologist, for example, just doesn't deal with MSH deficiency. We will use my database of nearly 2000 patients with illnesses associated with MSH deficiency to develop a double blind, placebo controlled, crossover clinical trial after we have done a titration study to prove how much MSH is needed, given in what route, for how long, with what side effects and with what adverse reactions over time. When our work demonstrates what I feel it will, then suddenly, there is hope for a large number of chronically suffering people of all ages."
For more information you can also visit the moldwarriors website which is the source of this article from Dr. R. Shoemaker.
I'm presently studying Adrenal Fatigue Syndrome as part of my Naturopathic studies ( Endocrinology is such a complex field and I now have a better understanding, why conventional medicine does not recognize Adrenal Fatigue/Hypoadrenalism,lol! ).
Low thyroid and/or low adrenal function is encountered more frequently in LD and co-infections, compared to rest of the population.
The difficulty in eradicating LD and its co-infections after years of "appropriate" treatment, may be due to unresolved thyroid/adrenal imbalances, hypercoagulation, nutritional & mineral deficiencies and other factors, often at sub-clinical levels, staying under the radar of conventional medicine investigation.
Make sure your LLMD is covering all this thoroughly and if not knowledgeable enough in Holistic & Intergrative Endocrinology -
have him or her refer you to a Health Practitioner who is.
FYI, look up the "Kalish Method" in regards to the above, not a recommendation though, as this would be unethical for me to do so, as a member of MedHelp, but simply as a resource for educational purposes only.
Love & Light
Niko
As the regulars here know, I don't frequent this part of the forum often,
but Ricobord's mention of Dr Shoemaker, reminded me of I recent interview
I read on a post form another forum, which I thought would be of special interest also to Lyme Disease and Co-infection sufferers.
"Here is some info about MSH that might be of interest. found on another group that was discussing mold illness/inflammation and it's effects.
If we have a low MSH, which a lot of us do, our Hypothalmus can really reek havok for us.
I found this.
Q What is MSH
A: MSH is an anti-inflammatory, regulatory hormone made in the hypothalamus. It controls production of hormones, modulates the immune system and controls nerve function, too. It is made when leptin is able to activate its receptor in the proopio-melanocortin (POMC) pathway. If the receptor is damaged by peripheral immune effects, such as the release of too many pro- inflammatory cytokines, like with Mast Cell Activation Disorder (MCAD), then the receptor doesn't work right and MSH isn't made. Leptin controls storage of fatty acids as fat, so MSH and leptin are a major source of interest.
Q: What does MSH do?
A: MSH sits as the central hub of a series of important effects. MSH controls hypothalamic production of melatonin and endorphins. Without MSH, deficiency creates chronic non-restful sleep and chronic increased perception of pain, respectively. MSH deficiency causes chronic fatigue and chronic pain. MSH also controls many protective effects in the skin, gut and mucus membranes of the nose and lung. It also controls the peripheral release of cytokines; when there isn't enough MSH, the peripheral inflammatory effects are multiplied. MSH also controls pituitary function, with 60% of MSH deficient patients not having enough antidiuretic hormone. These patients will be thirsty all the time, urinate frequently and often will have unusual sensitivity to static electrical shocks. 40% of MSH deficient patients won't regulate male hormone production and another 40% won't regulate pro- per control of ACTH and cortisol.
Q: What illnesses are associated with MSH deficiency?
A: Any illness that begins with excessive production of pro- inflammatory cytokines will usually cause MSH deficiency. This is the basic mechanism that underlies damage caused by exposure to biologically produced toxins neurotoxins (biotoxins) made by invertebrate organisms, including fungi (molds), dino- flagellates (ciguatera and Pfiesteria), spirochetes (Lyme disease), blue-green algae (Cylindrospermopsis in Florida and Microcystis all over the world) and bacteria, like anthrax. Nearly 100% of the patients who have Chronic Fatigue Syndrome (CFS) will have MSH deficiency. Do we know that all CFS is due to biotoxins? No.
Q: OK, if something is going on in the body that causes inflammation, like exposure to toxins made by mold in Sick Building Syndrome, and the immune system is cranking out these proteins, cytokines, that are great for our health when they are released in the right amount at the right time, but harmful when too many are made at the wrong time, why don't we just fix the cytokine response and watch MSH get going again?
A: Good question. We are looking at an incredibly small area in the hypothalamus, one in which there is a real risk of permanent damage from cytokines to blood flow to this pathway. And who is to say that the vital receptors aren't destroyed by too much attack for too long? Once MSH production is damaged too much, it is too late.
Q: So, if the toxin and cytokine illness goes undiagnosed, or someone says the illness doesn't exist, like what we have seen for a long time with mold and in Lyme disease, there are going to be people whose MSH supply just dwindles down to nothing.
A: Right. These patients are miserable. They live, but there is no life. They are given Oxycontin or Neurontin or Elavil or Xanax, for example, but nothing really helps. Families are destroyed, careers are ruined, financial resources are poured into tests that mean nothing and therapies that hopefully won't cause harm, because they never help. Even worse, because MSH levels are rarely measured, many doctors look at the MSH deficient patients as if they are making up the illness, making up the pain to get drugs or looking for disability. And lots of them end up on disability, costing our society not just the unnecessary expense but also costing us the lost productivity.
Q: What is the answer for those people who are MSH deficient? Why don't we just give them MSH? It should be so simple, like giving insulin to a diabetic who needs it, right?
A: Should be, but it isn't. The FDA is real particular about giving potent hormones like MSH to just anybody. Just look at cortisone. A little bit is necessary for life, but too much will kill you. MSH can't be given to people until animal toxicity studies are done, showing safety, and that costs a lot of money, even if the paper work can be done.
Q: Why don't all the big drug companies jump on this? If what you are telling me is that there are a large number of people who will need daily replacement of MSH, and by the way, it looks like our supply of Sick Buildings that will generate MSH deficient patients won't dry up any time soon, then there should be a huge market for somebody.
A: No doubt about that. There are companies looking at MSH as we speak for weight loss, skin pigment changes and as an antidepressant, but no one is looking at MSH in chronic, fatiguing illnesses.
Q: So, if you can raise the money to prove MSH is safe, then what?
A: Researchers at the NIH, like Dr. Robert Star, would likely be willing to help with the experiments in humans. I'm sure there are other academic researchers who would come forward, but the problem is that the experience of physicians with MSH is so limited. Certain researchers like Dr. James Lipton of Zengen and Dr. Star, who know MSH, know what a huge area of medicine is involved with MSH. But the average endocrinologist, for example, just doesn't deal with MSH deficiency. We will use my database of nearly 2000 patients with illnesses associated with MSH deficiency to develop a double blind, placebo controlled, crossover clinical trial after we have done a titration study to prove how much MSH is needed, given in what route, for how long, with what side effects and with what adverse reactions over time. When our work demonstrates what I feel it will, then suddenly, there is hope for a large number of chronically suffering people of all ages."
For more information you can also visit the moldwarriors website which is the source of this article from Dr. R. Shoemaker.
I'm presently studying Adrenal Fatigue Syndrome as part of my Naturopathic studies ( Endocrinology is such a complex field and I now have a better understanding, why conventional medicine does not recognize Adrenal Fatigue/Hypoadrenalism,lol! ).
Low thyroid and/or low adrenal function is encountered more frequently in LD and co-infections, compared to rest of the population.
The difficulty in eradicating LD and its co-infections after years of "appropriate" treatment, may be due to unresolved thyroid/adrenal imbalances, hypercoagulation, nutritional & mineral deficiencies and other factors, often at sub-clinical levels, staying under the radar of conventional medicine investigation.
Make sure your LLMD is covering all this thoroughly and if not knowledgeable enough in Holistic & Intergrative Endocrinology -
have him or her refer you to a Health Practitioner who is.
FYI, look up the "Kalish Method" in regards to the above, not a recommendation though, as this would be unethical for me to do so, as a member of MedHelp, but simply as a resource for educational purposes only.
Love & Light
Niko
Thanks so much Ricobord! That helps a lot :)
I am treating for Babesia now as well as the Lyme. Is Babesia any easier eradicate than Lyme? How long does treatment for Babesia typically last? What about Bartonella? Anyone know?
I have actually had all the genetic testing done, and I'm clean. Unlike many Lyme patients, I don't have any significant issues with detoxification! I've had the HLA testing done, and there was no problem there. Had the MTHFR testing, not a problem there either. I've been through Shoemakers work and had a few of his other labs done of which raised some possibilities. However, I think Lyme toxins can throw off some of the same labs as mold toxicity. So it's sort of hard to know for sure. I passed the VCS though, so I don't know. I just keep getting mixed results.
It's such a confusing mess! I may need to look into heavy metal testing though.
I am treating for Babesia now as well as the Lyme. Is Babesia any easier eradicate than Lyme? How long does treatment for Babesia typically last? What about Bartonella? Anyone know?
I have actually had all the genetic testing done, and I'm clean. Unlike many Lyme patients, I don't have any significant issues with detoxification! I've had the HLA testing done, and there was no problem there. Had the MTHFR testing, not a problem there either. I've been through Shoemakers work and had a few of his other labs done of which raised some possibilities. However, I think Lyme toxins can throw off some of the same labs as mold toxicity. So it's sort of hard to know for sure. I passed the VCS though, so I don't know. I just keep getting mixed results.
It's such a confusing mess! I may need to look into heavy metal testing though.
There is a lot of overlap of symptoms between Lyme and Bartonella. It's possible that your lack of improvement is due to an untreated coinfection, such as Bart or Babs. I've been surprised in my Bartonella relapse to realize how many symptoms I thought were from Lyme were most likely from Bartonella (or both).
Babesia somehow blocks Lyme treatment, and some ILADS docs have said that lack of improvement in Lyme symptoms is often an indicator of Babs.
In my case, a variety of oral meds for Lyme didn't give me any improvement. Augmentin stopped it from getting worse, but was very hard on my gut. I switched to Omnicef and got sicker.
I have only shown improvement on Bicillin and Rocephin, but then I have a nasty case of neuro Lyme. I improved faster on Rocephin than I did on Bicillin, but I am hypothesizing that's because Rocephin has some anti-Bartonella effect, whereas Bicillin does not. (Bart is turning out to be a bigger factor in me than we'd thought.)
People with Lyme who don't improve with treatment often have other issues interfering with treatment, such as excess heavy metals in the body, or a mold overload. Some people genetically can't eliminate the mold as efficiently as other people, resulting in a toxic overload.
You might read up a bit on Shoemaker's research and treatment for people with mold. There is lab testing for heavy metals, but if cost is an issue, you can just take detoxing herbals and foods as part of your program. (Cilantro and Parsley are especially good.)
Lack of improvement is very frustrating. I speak from experience! It usually indicates a need to dig deeper to see what else is going on. This is why one doctor labeled our condition "The Lyme Complex." It's often not just a simple infection to be treated in a couple weeks.
Babesia somehow blocks Lyme treatment, and some ILADS docs have said that lack of improvement in Lyme symptoms is often an indicator of Babs.
In my case, a variety of oral meds for Lyme didn't give me any improvement. Augmentin stopped it from getting worse, but was very hard on my gut. I switched to Omnicef and got sicker.
I have only shown improvement on Bicillin and Rocephin, but then I have a nasty case of neuro Lyme. I improved faster on Rocephin than I did on Bicillin, but I am hypothesizing that's because Rocephin has some anti-Bartonella effect, whereas Bicillin does not. (Bart is turning out to be a bigger factor in me than we'd thought.)
People with Lyme who don't improve with treatment often have other issues interfering with treatment, such as excess heavy metals in the body, or a mold overload. Some people genetically can't eliminate the mold as efficiently as other people, resulting in a toxic overload.
You might read up a bit on Shoemaker's research and treatment for people with mold. There is lab testing for heavy metals, but if cost is an issue, you can just take detoxing herbals and foods as part of your program. (Cilantro and Parsley are especially good.)
Lack of improvement is very frustrating. I speak from experience! It usually indicates a need to dig deeper to see what else is going on. This is why one doctor labeled our condition "The Lyme Complex." It's often not just a simple infection to be treated in a couple weeks.
Don't consider my experience with Flagyl as the norm but it wasn't that uncommon.
I couldn't take it! Period. Developed Lyme Rage (my only instance of it, ever) and ataxia and other nasty things.
I couldn't take it! Period. Developed Lyme Rage (my only instance of it, ever) and ataxia and other nasty things.
Congratulations mojogal!
I was only on antibiotics for six months before I forked out the money for an IGenex and it came back CDC positive. Before any treatment I had a mainstream ELISA and a LabCorp western blot, all which came back completely negative. The same bands that were positive on the IGenex six months into treatment.
I'm considering a coinfection panel. They are just expensive. I suspect Babesia for sure. Bartonella is the one that I am unsure of. Were you positive for Bart, mojogal? Or just clinically dx. Not sure how accurate all the coinfection testing is. Keep us posted, if you would!
I think that I am about to switch to Flagyl for four weeks straight, if anyone has any experiences with that one. It will not be paired with any other antibiotics.
Thanks for the comments!!
I was only on antibiotics for six months before I forked out the money for an IGenex and it came back CDC positive. Before any treatment I had a mainstream ELISA and a LabCorp western blot, all which came back completely negative. The same bands that were positive on the IGenex six months into treatment.
I'm considering a coinfection panel. They are just expensive. I suspect Babesia for sure. Bartonella is the one that I am unsure of. Were you positive for Bart, mojogal? Or just clinically dx. Not sure how accurate all the coinfection testing is. Keep us posted, if you would!
I think that I am about to switch to Flagyl for four weeks straight, if anyone has any experiences with that one. It will not be paired with any other antibiotics.
Thanks for the comments!!
I've been undiagnosed for over a year, before finally receiving my test results from Igenex last month. Igenex IFA and IgM came back positive.
Last year I was on two types of antibiotics: Clindomycin and Doxy, 10 days each. Clindomycin caused a lot of abdominal pain, where as Doxy helped more, but not significantly so that I could claim 75% improvement.
I got more herxheimer reaction while being on herbals, i.e. Cat's Claw and Wormwood.
Lately I have switched to herbals all together developing my own protocol through trials and errors.
Having been on herbals for 1 year has given me 50% improvement. I am sticking to herbal protocol and staying away from antibiotics.
Last year I was on two types of antibiotics: Clindomycin and Doxy, 10 days each. Clindomycin caused a lot of abdominal pain, where as Doxy helped more, but not significantly so that I could claim 75% improvement.
I got more herxheimer reaction while being on herbals, i.e. Cat's Claw and Wormwood.
Lately I have switched to herbals all together developing my own protocol through trials and errors.
Having been on herbals for 1 year has given me 50% improvement. I am sticking to herbal protocol and staying away from antibiotics.
Although the Western Blot tests for Lyme, given by Lyme specialty labs, are the best we have at this point---- they are far from perfect.
The bands can drift (antigenic shift) from test to test in the same person. Borrelia burgdorferi is a master at evasion and subterfuge.
The bands can drift (antigenic shift) from test to test in the same person. Borrelia burgdorferi is a master at evasion and subterfuge.
What does it mean now that you are CDC positive? That it's like coming to the surface so to speak?
Sorry, I'm just trying to learn all I can about this.
Sorry, I'm just trying to learn all I can about this.
I am truly in shock, after 18 months on various abx I am now CDC positive for Lyme. I wasn't before, I was just positive, I also have Bart's but my co panel test from IgeneX will come back soon. I am staying with natural meds now.
When i took doxy, within three days i thought i was going to die. I had everything thrown at me including my memory going weird.
Sadly for me, my NHS doctor hasnt got a clue, never even heard of herxing.
She only started me on doxy as i had been to the breakspeare clinic and Dr Munro, diagnosed me with Lymes, co infection, and MS, and said i need to have the doxy, but i couldnt afford their treatment plan. However, she did send a letter to my GP and asked her to start me on it.
So anyway long story short, my GP told me to stop taking the doxy she was more inclined to think i was allergic to it, and i have been ill ever since.
I gave up and now have councelling just to get through each day.
LYMES if untreated for a long time, can take a long time to shift.
I would stick with the programme. Perhaps you changed the antibiotics too quickly. It can take months to see an improvement.
Like you said you could have other issues. A lot of people with lymes have fibro as well. xx
Sadly for me, my NHS doctor hasnt got a clue, never even heard of herxing.
She only started me on doxy as i had been to the breakspeare clinic and Dr Munro, diagnosed me with Lymes, co infection, and MS, and said i need to have the doxy, but i couldnt afford their treatment plan. However, she did send a letter to my GP and asked her to start me on it.
So anyway long story short, my GP told me to stop taking the doxy she was more inclined to think i was allergic to it, and i have been ill ever since.
I gave up and now have councelling just to get through each day.
LYMES if untreated for a long time, can take a long time to shift.
I would stick with the programme. Perhaps you changed the antibiotics too quickly. It can take months to see an improvement.
Like you said you could have other issues. A lot of people with lymes have fibro as well. xx
Thanks!
I know. It wasn't so much that I didn't get the much so anticipated herxheimer reaction. I would just expect to feel some improvement by now. However, I am wide open to the idea that maybe my improvement to going to be too slow to notice. My illness gradually came on that way. So I don't know. I only wish there was SOME type test, that could give me some sort of lead. Maybe I am improving in my own little way. But than again, maybe I am not.
Perhaps Lyme isn't even the primary issue. I am treating for Babesia as well. I just began it not about a week ago. But so far, it's the same thing. No herxheimer. Improvement?? I'll just have to wait and see with that one!
I know. It wasn't so much that I didn't get the much so anticipated herxheimer reaction. I would just expect to feel some improvement by now. However, I am wide open to the idea that maybe my improvement to going to be too slow to notice. My illness gradually came on that way. So I don't know. I only wish there was SOME type test, that could give me some sort of lead. Maybe I am improving in my own little way. But than again, maybe I am not.
Perhaps Lyme isn't even the primary issue. I am treating for Babesia as well. I just began it not about a week ago. But so far, it's the same thing. No herxheimer. Improvement?? I'll just have to wait and see with that one!
Yes I agree with cave.
It's been around 5 months for me. I had one small herx consisting of a fever and diarrhea overnight on the 4th day ever of doxy. I felt better in the morning except for getting no sleep.
That was it. No worsening of symptoms ever, just some improvement.
But I've definitely plateaued so my LLMD is changing the meds.
It's been around 5 months for me. I had one small herx consisting of a fever and diarrhea overnight on the 4th day ever of doxy. I felt better in the morning except for getting no sleep.
That was it. No worsening of symptoms ever, just some improvement.
But I've definitely plateaued so my LLMD is changing the meds.
Not everyone gets a herxheimer reaction. Or they get one that's very minor.
You haven't been on abx very long so it's early days yet. Or you may not have hit on the abx that will work for YOU.
Not many things can be said with certainty about Lyme but the one thing that CAN is---- each person will respond/get better or worse via different protocols.
You haven't been on abx very long so it's early days yet. Or you may not have hit on the abx that will work for YOU.
Not many things can be said with certainty about Lyme but the one thing that CAN is---- each person will respond/get better or worse via different protocols.
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