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Just diagnosed with Lyme's Disease after treatment for Hodgkins Lymphoma - Please Help
I just finished a very aggressive treatment for Hodgkin's Lymphoma in August 2010. I have been trying to recoup, but I have had so many symptoms that have been quite alarming. I finally had a Igenex lab western blot test done for Lyme's disease, and a PCR Serum and Whole Blood to confirm the results of the Western Blot.- all three came back positive. Is there anyone else out there that has dealt with both diseases at the same time? And if so, do you know if there is a link between cancer and Lyme's? Please help.
Diagnosed with HL June 2015, 6 months Chemo. Well I went in remission from HL Nov. 2015. Before Chemo I was screened for any type of Limes or any other bacteria etc. in the blood.... The highest test you can give....
So, before treating you for HL they know if you have Limes....I was Negative for Limes.
Fast forward to April 27, 2017 Fourteen days ago, I founded a tick on my back it could not have been there long was not there the previous morning after shower the next morning I saw it red rash Tick still attached, I removed the Tick took it to Dr. was at the Dr. within two hours, Dr. Looked at bite mark, Drew my blood sent it to Hospital Lab... LIME Test performed, and six days after I found the tick had blood drawn for testing, my test came back POSITIVE... I now have Limes Disease. The day I discovered the tick at the Dr.'s they. Put me on antibiotic treatment before getting my test results. I am to have intensive blood work testing in six weeks for initial removal of the tick, my antibiotic is for thirty days, two weeks after I complete the antibiotic, I will have the blood panel testing. My issue and my Dr. Concern is my immune system could not even begin to fight the tick bight and my test was ABSOLUTE POSITIVE... a lot of test come back Neg. Not mine and this tick was not on me long... SO I WILL FIND OUT... I WAS DIAGNOSED WITH fibromyalgia in 2007 and had many Limes test prior to Lymphoma in 2015 and yes I had the full panel testing not just the basic test all were Neg and backed up by my pre Chemo treatment. I did not have a Limes prior to Lymphoma... Chemo really did a number on my immune system, I now worry if antibiotic will be enough because my immune system depleted from Chemo and what other issues will I face in the future... on the antibiotic I have low energy, hard time focusing, neck ach, very tired... etc... TIME WILL TELL.... MAINLY CAN IT CAUSE MY CANCER TO COME BACK?
So, before treating you for HL they know if you have Limes....I was Negative for Limes.
Fast forward to April 27, 2017 Fourteen days ago, I founded a tick on my back it could not have been there long was not there the previous morning after shower the next morning I saw it red rash Tick still attached, I removed the Tick took it to Dr. was at the Dr. within two hours, Dr. Looked at bite mark, Drew my blood sent it to Hospital Lab... LIME Test performed, and six days after I found the tick had blood drawn for testing, my test came back POSITIVE... I now have Limes Disease. The day I discovered the tick at the Dr.'s they. Put me on antibiotic treatment before getting my test results. I am to have intensive blood work testing in six weeks for initial removal of the tick, my antibiotic is for thirty days, two weeks after I complete the antibiotic, I will have the blood panel testing. My issue and my Dr. Concern is my immune system could not even begin to fight the tick bight and my test was ABSOLUTE POSITIVE... a lot of test come back Neg. Not mine and this tick was not on me long... SO I WILL FIND OUT... I WAS DIAGNOSED WITH fibromyalgia in 2007 and had many Limes test prior to Lymphoma in 2015 and yes I had the full panel testing not just the basic test all were Neg and backed up by my pre Chemo treatment. I did not have a Limes prior to Lymphoma... Chemo really did a number on my immune system, I now worry if antibiotic will be enough because my immune system depleted from Chemo and what other issues will I face in the future... on the antibiotic I have low energy, hard time focusing, neck ach, very tired... etc... TIME WILL TELL.... MAINLY CAN IT CAUSE MY CANCER TO COME BACK?
2 Comments
I want to update I think I was tested. They are going to do more testing to see if I am Chronic... I was told I had Fibromyalgia since 2007. Mention to my Dr. They would have screened for Limes, she said she would have to check, so I don't know...
It is now July and I am loosing my mind... I am going crazy, very emotional, I just can't get a grip and my family is torchering me by not understanding. I battled Hodgkins Lymphoma in remission, now Limes, oh and the broken right ankle and torn ligaments in left, then restrain in left... Chemo destroyed my teeth do 7,000.00 dental work... I am at my last wit... I was on antibiotic for Limes waiting for new blood work part has returned waiting on more results... WHAT IS UP WITH THAT??? I am so paranoid Cancer is back... I really need to find peace... or a mental ward...
Before you assume that Lyme is connected to lymphoma, or that treatment for Lyme would cause lymphoma to recur, you should talk with your doc, but until you have that discussion, don't borrow worry. I don't know why there would be a connection.
I had Lyme and a coinfection, babesiosis. The babesia, which is like malaria, was treated first for about 5 months. Then I switched to other antibiotics more specifically for Lyme, for about a year. Depending on what coinfections you have, that will determine what meds you take and in which order your infections are treated.
Insurance companies are in the business of not paying for treatment which the medical community does not believe justified, but my insurance paid at least part for all the antibiotics I had, and they never resisted. Some insurance companies may need direct confirmation from the doc as to why something has been prescribed. I do not know of any websites that pay for medical expenses.
I had Lyme and a coinfection, babesiosis. The babesia, which is like malaria, was treated first for about 5 months. Then I switched to other antibiotics more specifically for Lyme, for about a year. Depending on what coinfections you have, that will determine what meds you take and in which order your infections are treated.
Insurance companies are in the business of not paying for treatment which the medical community does not believe justified, but my insurance paid at least part for all the antibiotics I had, and they never resisted. Some insurance companies may need direct confirmation from the doc as to why something has been prescribed. I do not know of any websites that pay for medical expenses.
I really appreciate you getting back to me, and taking the time to settle my fears. I was told that this could also be a long process. I just know that I am not feeling well, and I am so scared that if this does not get treated right away, my Lymphoma will come back - my body has been through a lot this past year and I am fearful of the effects of all the antibiotics I might need. How long were you on them or are you still being treated?
I am also experiencing the endless battle with insurance/and why this is not considered a real serious medical condition? Can you recommend any websites to help with medical costs/good doctors/ coverage?
I am also experiencing the endless battle with insurance/and why this is not considered a real serious medical condition? Can you recommend any websites to help with medical costs/good doctors/ coverage?
1 Comments
Eric22 I am in the same boat as you. Finished my HL treatment (well didnt even finis but thats another story) and now have discovered I have Lyme and maybe bartonella. I DO believe there is a direct on ection to the Lyme and my HL I believe the Lyme helped manifest the HL and I worry that doing the treatment , stirring up the Lyme will increase my chances of HL reoccuring. However, I know I HAVE to try to get rid of it. I think this is an old post and Ive never commented on something like this before so I dont know how I will know if you reply or anything :-( but Id love to know how you are now.
Be not afraid -- though we all feel that way at times. It is a side effect of the disease: because Lyme affects the nervous and endocrine systems, it also affects mood and emotion. I had never been anxious, till Lyme. Now that I am well into treatment, the anxiety is going away, and what a relief! It is very hard for me to be anxious and also be objective about it at the same time, and I think that's true for most and maybe all of us. But try to factor that into how you feel, and know that it will pass.
One thing that works for me is to take magnesium supplements (tho check with your doc), which is relaxing and soothing, like a warm glass of milk. I was a nervous wreck when I was first ill, and the docs of course thought I was just being ... female. Bah.
On to your questions about treatment: yes, treatment works. It takes a while, longer than 'regular' bacterial infection, because the Lyme bacteria have certain characteristics that make them quite persistent: for one, a long reproductive cycle compared to 'regular' bacteria, and it is when dividing (reproducing) that bacteria are most susceptible to antibiotics -- other disease such as tuberculosis have similarly long treatment times; for another, Lyme has a trick of hiding in so-called biofilms in the body that conceal the bacteria from your immune system, and that makes them harder to access and kill.
If you have other diseases carried by the same tick that gave you Lyme (called generally 'co-infections'), those have to be diagnosed and treated separately from Lyme, which also prolongs the treatment time.
The mainstream treatment is antibiotics, but some docs also use supplements to support the immune system, and some use only herbal/supplement treatments. I have found that a combination works best for me, but everyone is different.
It would seem logical that the longer one has been infected, the longer it takes to treat, but I'm not sure that's true once you get beyond a quite new infection. In any event, LLMDs often treat for well over a year.
Treatment and cure are not always a straight road, because this is one tricky disease, so don't expect a couple of weeks of antibiotics and done -- but also be glad that you at last know what you have!
One thing that works for me is to take magnesium supplements (tho check with your doc), which is relaxing and soothing, like a warm glass of milk. I was a nervous wreck when I was first ill, and the docs of course thought I was just being ... female. Bah.
On to your questions about treatment: yes, treatment works. It takes a while, longer than 'regular' bacterial infection, because the Lyme bacteria have certain characteristics that make them quite persistent: for one, a long reproductive cycle compared to 'regular' bacteria, and it is when dividing (reproducing) that bacteria are most susceptible to antibiotics -- other disease such as tuberculosis have similarly long treatment times; for another, Lyme has a trick of hiding in so-called biofilms in the body that conceal the bacteria from your immune system, and that makes them harder to access and kill.
If you have other diseases carried by the same tick that gave you Lyme (called generally 'co-infections'), those have to be diagnosed and treated separately from Lyme, which also prolongs the treatment time.
The mainstream treatment is antibiotics, but some docs also use supplements to support the immune system, and some use only herbal/supplement treatments. I have found that a combination works best for me, but everyone is different.
It would seem logical that the longer one has been infected, the longer it takes to treat, but I'm not sure that's true once you get beyond a quite new infection. In any event, LLMDs often treat for well over a year.
Treatment and cure are not always a straight road, because this is one tricky disease, so don't expect a couple of weeks of antibiotics and done -- but also be glad that you at last know what you have!
Thank you! I think I have been infected with Lyme's for over 6 years now. I am assuming that I will be diagnosed with chronic lyme's - based on my symptoms. Can anyone also tell me if treatment has worked for them??? Is this treatable if I have had it this long??? Please share some insight...I am so new to this world, and scared because I have an underlying cancer that might relapse as a result. Thank you!
Welcome. I just searched "lyme lymphoma" and found quite a number of articles and posts, and those may provide some data for you.
Beyond that I have no knowledge, unfortunately. It is also possible to have Lyme and get another disease, or vice versa.
Others here may have comments too. Best wishes -- let us know how you do, okay?
Beyond that I have no knowledge, unfortunately. It is also possible to have Lyme and get another disease, or vice versa.
Others here may have comments too. Best wishes -- let us know how you do, okay?
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