Well, I'm pretty sure I may have recently contracted Lyme disease. I finally healed from those nasty fevers with bad chills I had two weeks ago, but then last week I discovered a rash on my front thigh that started looking like a "moon dog" - better known as the bull's eye. It's now 3" x 4" in size.
Saw my physician today and he's putting me on doxycycline for 3 weeks. I have a lot more research to do. He did not run any tests because he said tests would not reveal anything yet.
I know this isn't exactly relevant to these forums. But it may explain why I was so sick and that it wasn't related to the MGUS.
Forums
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Lyme disease
Hi Toni, If it is Lyme's disease, it's good that you caught it early! And if the doxycycline works well, you would soon be feeling better also. I hope that is the case.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Lyme disease
Hello Toni,
Did the antibiotics help you feel better? Do you feel confident that you suffered from untreated lyme? Please let us know if your symptoms of infection and malaise dissipate with treatment.
Best
J
Did the antibiotics help you feel better? Do you feel confident that you suffered from untreated lyme? Please let us know if your symptoms of infection and malaise dissipate with treatment.
Best
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Lyme disease
jhorner -
The antibiotics seem to be doing their job.The rash became less inflamed and stopped growing (it had become 5" x 5" [13 cm x 13 cm] at the largest). We are now 2 1/2 weeks out and the rash is very slowly healing. There is still a dark spot in most of the area. But the good news is that I generally feel better. As for the body aches, etc., the fevers and chills are gone, but I have some body aches and tendency to tire and some digestive issues that I am not sure are from this or just needing physical therapy exercises again.
Since doxycycline is a broad spectrum antibiotic, I would assume it will protect me from other contagious diseases, so I'd be interested to see what happens once I'm fully off of it. The kids are back in school, I started a new job, and autumn is coming, so it's that time for all of us to share our germs!
One other note, evidently Lyme disease is caused by a bacteria that reacts to the introduction of antibiotics in a somewhat strange way. For some patients, there is a worsening of symptoms for about 24 hours. I did no know this, but I found that when I started the treatment, I began feeling awful - body pain, feverish, chills.
There is a phenomenon called a Jarisch-Herxheimer reaction which explains why this happens. It's "a reaction to endotoxins released by the death of harmful organisms within the body". But it usually reverses after a day or two and then the symptoms abate and the body begins to heal.
Thank you for your inquiry.
The antibiotics seem to be doing their job.The rash became less inflamed and stopped growing (it had become 5" x 5" [13 cm x 13 cm] at the largest). We are now 2 1/2 weeks out and the rash is very slowly healing. There is still a dark spot in most of the area. But the good news is that I generally feel better. As for the body aches, etc., the fevers and chills are gone, but I have some body aches and tendency to tire and some digestive issues that I am not sure are from this or just needing physical therapy exercises again.
Since doxycycline is a broad spectrum antibiotic, I would assume it will protect me from other contagious diseases, so I'd be interested to see what happens once I'm fully off of it. The kids are back in school, I started a new job, and autumn is coming, so it's that time for all of us to share our germs!
One other note, evidently Lyme disease is caused by a bacteria that reacts to the introduction of antibiotics in a somewhat strange way. For some patients, there is a worsening of symptoms for about 24 hours. I did no know this, but I found that when I started the treatment, I began feeling awful - body pain, feverish, chills.
There is a phenomenon called a Jarisch-Herxheimer reaction which explains why this happens. It's "a reaction to endotoxins released by the death of harmful organisms within the body". But it usually reverses after a day or two and then the symptoms abate and the body begins to heal.
Thank you for your inquiry.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Lyme disease
I have chronic Lyme disease and have been in treatment for years because my diagnosis came 30 years late. I was misdiagnosed with lupus. My husband was diagnosed with multiple myeloma in May of this year. I will always wonder if Lyme was his trigger. My children have congenital Lyme and I believe that Lyme can be passed sexually. Research shows higher incidence from female to male, which is opposite of HIV.
If anyone I knew had a new case of Lyme disease, I would make sure they took longer than 3 weeks of doxycycline. The good Lyme docs out east who are treating the disease know that you have to medicate through at least one spirochete reproductive cycle. They also treat until all symptoms are gone. May be difficult in your case to know what is Lyme and what is multiple myeloma. Good Lyme docs also know now that the spirochete can go into cyst for much faster than previously thought and are treating with a second prescription of a cyst buster such as Flagyl (metronidazole) or Tindamax (tinidazole).
The CDC treatment guidelines are outdated and lacking. There is a ton of misinformation on the Internet regarding Lyme disease.
I heard that some oncologists in endemic Lyme disease states are seeing more multiple myeloma patients who have Lyme. The theory is that improperly treated Lyme disease that becomes chronic weakens the immune system and allows for cancers to do their thing.
You were fortunate to get the bullseye rash. Herxing is no fun at all! Hope everything works out well for you!
KLD
If anyone I knew had a new case of Lyme disease, I would make sure they took longer than 3 weeks of doxycycline. The good Lyme docs out east who are treating the disease know that you have to medicate through at least one spirochete reproductive cycle. They also treat until all symptoms are gone. May be difficult in your case to know what is Lyme and what is multiple myeloma. Good Lyme docs also know now that the spirochete can go into cyst for much faster than previously thought and are treating with a second prescription of a cyst buster such as Flagyl (metronidazole) or Tindamax (tinidazole).
The CDC treatment guidelines are outdated and lacking. There is a ton of misinformation on the Internet regarding Lyme disease.
I heard that some oncologists in endemic Lyme disease states are seeing more multiple myeloma patients who have Lyme. The theory is that improperly treated Lyme disease that becomes chronic weakens the immune system and allows for cancers to do their thing.
You were fortunate to get the bullseye rash. Herxing is no fun at all! Hope everything works out well for you!
KLD
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KLD
Re: Lyme disease
KLD,
Thank you for posting. Fortunately, I am not multiple myeloma, only MGUS currently. I am so sorry you and your husband have such serious health issues.
As for the Lyme disease, thank you for your information. It is very difficult to discern what is proven treatment for any disease by reading through the Internet, so I will to do some more research.
Fortunately, my primary care doctor is very amenable to any suggestions or concerns I make. I was just glad that he prescribed 3 weeks of antibiotics instead of only 10 days, as some have regularly done.
Toni
Thank you for posting. Fortunately, I am not multiple myeloma, only MGUS currently. I am so sorry you and your husband have such serious health issues.
As for the Lyme disease, thank you for your information. It is very difficult to discern what is proven treatment for any disease by reading through the Internet, so I will to do some more research.
Fortunately, my primary care doctor is very amenable to any suggestions or concerns I make. I was just glad that he prescribed 3 weeks of antibiotics instead of only 10 days, as some have regularly done.
Toni
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Lyme disease
Toni,
KLD raises some good points. If I were you, I would seriously consider the longer doxycycline treatment that she mentioned as well as taking the additional antibioties she suggested.
Given that you have MGUS, there's no reason to risk allowing the infection that you now have turn into something chronic just because you didn't want to treat it longer and more intensively.
Why risk allowing something to become chronic, stress your immune system, and potentially raise the likelihood of your MGUS progressing to multiple myeloma?
KLD raises some good points. If I were you, I would seriously consider the longer doxycycline treatment that she mentioned as well as taking the additional antibioties she suggested.
Given that you have MGUS, there's no reason to risk allowing the infection that you now have turn into something chronic just because you didn't want to treat it longer and more intensively.
Why risk allowing something to become chronic, stress your immune system, and potentially raise the likelihood of your MGUS progressing to multiple myeloma?
Re: Lyme disease
I was seeing a neurologist for neuro-lyme disease and had neuropathy complaints so he ordered the SPEP. Fortunately.
I had positive m-proteins (0.6 - 0.9 g/dL) in blood plasma with abnormal kappa / lambda free light chain ratio with high levels of lambda light chains. M-spike present in blood, urine (Bence-Jones) and BMB also showing 5% plasma cells and lambda light chains. Congo red & fat pad biopsy negative for amyloidosis.
Negative for amyloidosis or lymphoma.
This was all discovered / diagnosed age 36. I'm currently monitored every 6 months.
Oncologist believes it could be due to the chronic inflammatory process from having post Lyme disease severe arthritis. He is seeing a subset of younger patients with either MGUS or multiple myeloma with one thing in common: chronic Lyme!!
There are clinical research studies done on the prevalence of MGUS / multiple myeloma in correlation to autoimmune diseases like lupus and RA, due to the inflammatory process, but nothing has been published to date to my knowledge on the causal link with Lyme disease.
Lyme is so controversial that many choose to avoid the topic altogether. However, the multitude of chronic Lyme sufferers are not being heard by the medical community. It's such a shame but unless the cancer link is discovered between the two and documented, our pleas for help will continue to go unnoticed.
I highly recommend all chronic Lyme sufferers to get an SPEP test.
I had positive m-proteins (0.6 - 0.9 g/dL) in blood plasma with abnormal kappa / lambda free light chain ratio with high levels of lambda light chains. M-spike present in blood, urine (Bence-Jones) and BMB also showing 5% plasma cells and lambda light chains. Congo red & fat pad biopsy negative for amyloidosis.
Negative for amyloidosis or lymphoma.
This was all discovered / diagnosed age 36. I'm currently monitored every 6 months.
Oncologist believes it could be due to the chronic inflammatory process from having post Lyme disease severe arthritis. He is seeing a subset of younger patients with either MGUS or multiple myeloma with one thing in common: chronic Lyme!!
There are clinical research studies done on the prevalence of MGUS / multiple myeloma in correlation to autoimmune diseases like lupus and RA, due to the inflammatory process, but nothing has been published to date to my knowledge on the causal link with Lyme disease.
Lyme is so controversial that many choose to avoid the topic altogether. However, the multitude of chronic Lyme sufferers are not being heard by the medical community. It's such a shame but unless the cancer link is discovered between the two and documented, our pleas for help will continue to go unnoticed.
I highly recommend all chronic Lyme sufferers to get an SPEP test.
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Rosie+George - Who do you know with myeloma?: MGUS-myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 36
Re: Lyme disease
Rosie+George,
Someday perhaps we'll be lucky to see some solid studies that show a link between MGUS and some sort of specific trigger, if in fact there is one.
I just want to clarify for anyone who might read this thread, in my case I was treated within weeks of the tick bite with a strong, broad spectrum antibiotic for 3 weeks. This is significantly different than those who do not detect the tick bite and ensuing issues and thus go untreated for months or years. I'm quite fortunate that this tick bite resulted in such a significant symptom.
A word of caution for all of us: Go back to the Mayo studies to get a good idea of causative factors for MGUS/SMM/multiple myeloma. These were thousands of people who's blood and health data were collected over a period of years so that any triggers could be identified. If I remember correctly, the only consistent factor was farm workers/chemical workers and I don't think anything else was clinically significant. That does not rule out others, it just doesn't provide for any strong links.
Someday perhaps we'll be lucky to see some solid studies that show a link between MGUS and some sort of specific trigger, if in fact there is one.
I just want to clarify for anyone who might read this thread, in my case I was treated within weeks of the tick bite with a strong, broad spectrum antibiotic for 3 weeks. This is significantly different than those who do not detect the tick bite and ensuing issues and thus go untreated for months or years. I'm quite fortunate that this tick bite resulted in such a significant symptom.
A word of caution for all of us: Go back to the Mayo studies to get a good idea of causative factors for MGUS/SMM/multiple myeloma. These were thousands of people who's blood and health data were collected over a period of years so that any triggers could be identified. If I remember correctly, the only consistent factor was farm workers/chemical workers and I don't think anything else was clinically significant. That does not rule out others, it just doesn't provide for any strong links.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Lyme disease
Yes I agree regarding early detection and treatment with Lyme disease can have very good or even curative outcomes. That is why I mentioned only chronic lyme sufferers which fall into that small subset category that may be at risk for an inflammatory process.
As I mentioned there has been clinical studies linking MGUS to a possible causal link to those whom may have auto immune disease. Pubmed is a resource for the scientific community to locate scientific research articles. I personally am a clinical scientist and often use this web tool to gain access to a multitude of respected journals and the latest scientific abstracts and case studies.
Some research articles that I was referencing can be found there. For example:
http://www.ncbi.nlm.nih.gov/m/pubmed/24451437/
Prior autoimmune disease and risk of monoclonal gammopathy of undetermined significance and multiple myeloma: a systematic review.
AuthorsMcShane CM, et al. Show all Journal
Cancer Epidemiol Biomarkers Prev. 2014 Feb;23(2):332-42. doi: 10.1158/1055-9965.EPI-13-0695. Epub 2014 Jan 22.
http://www.ncbi.nlm.nih.gov/m/pubmed/18239085/?i=2&from=/24451437/related
Risk of multiple myeloma and monoclonal gammopathy of undetermined significance among white and black male United States veterans with prior autoimmune, infectious, inflammatory, and allergic disorders.
AuthorsBrown LM, et al. Show all Journal
Blood. 2008 Apr 1;111(7):3388-94. doi: 10.1182/blood-2007-10-121285. Epub 2008 Jan 31.
http://www.ncbi.nlm.nih.gov/m/pubmed/21998210/?i=3&from=/24451437/related
Personal and family history of immune-related conditions increase the risk of plasma cell disorders: a population-based study.
AuthorsLindqvist EK, et al. Show all Journal
Blood. 2011 Dec 8;118(24):6284-91. doi: 10.1182/blood-2011-04-347559. Epub 2011 Oct 13.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1004194/?page=2
Rheumatoid arthritis, malignancy, and paraproteins.
AuthorsKelly C, et al. Show all Journal
Ann Rheum Dis. 1990 Sep;49(9):657-9.
****Ultimately there are no conclusive studies that point to the absolute or definite cause of MGUS. However, the science can speculate links. Just a few years ago any causal links were debunked, yet more recent clinical case trials reveal potential causal speculations. Whether conclusively defined or not the data now available should lead to at least surveillance (testing in lay mans terms). Ultimately in any disease origin, early detection provides the best outcome. This is the point I was trying to make.
As I mentioned there has been clinical studies linking MGUS to a possible causal link to those whom may have auto immune disease. Pubmed is a resource for the scientific community to locate scientific research articles. I personally am a clinical scientist and often use this web tool to gain access to a multitude of respected journals and the latest scientific abstracts and case studies.
Some research articles that I was referencing can be found there. For example:
http://www.ncbi.nlm.nih.gov/m/pubmed/24451437/
Prior autoimmune disease and risk of monoclonal gammopathy of undetermined significance and multiple myeloma: a systematic review.
AuthorsMcShane CM, et al. Show all Journal
Cancer Epidemiol Biomarkers Prev. 2014 Feb;23(2):332-42. doi: 10.1158/1055-9965.EPI-13-0695. Epub 2014 Jan 22.
http://www.ncbi.nlm.nih.gov/m/pubmed/18239085/?i=2&from=/24451437/related
Risk of multiple myeloma and monoclonal gammopathy of undetermined significance among white and black male United States veterans with prior autoimmune, infectious, inflammatory, and allergic disorders.
AuthorsBrown LM, et al. Show all Journal
Blood. 2008 Apr 1;111(7):3388-94. doi: 10.1182/blood-2007-10-121285. Epub 2008 Jan 31.
http://www.ncbi.nlm.nih.gov/m/pubmed/21998210/?i=3&from=/24451437/related
Personal and family history of immune-related conditions increase the risk of plasma cell disorders: a population-based study.
AuthorsLindqvist EK, et al. Show all Journal
Blood. 2011 Dec 8;118(24):6284-91. doi: 10.1182/blood-2011-04-347559. Epub 2011 Oct 13.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1004194/?page=2
Rheumatoid arthritis, malignancy, and paraproteins.
AuthorsKelly C, et al. Show all Journal
Ann Rheum Dis. 1990 Sep;49(9):657-9.
****Ultimately there are no conclusive studies that point to the absolute or definite cause of MGUS. However, the science can speculate links. Just a few years ago any causal links were debunked, yet more recent clinical case trials reveal potential causal speculations. Whether conclusively defined or not the data now available should lead to at least surveillance (testing in lay mans terms). Ultimately in any disease origin, early detection provides the best outcome. This is the point I was trying to make.
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Rosie+George - Who do you know with myeloma?: MGUS-myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 36
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