Help - Lyme & Lymphoma (Disulfiram Related)

Cliff notes of my story:

-Woke up with a tick on me and a bullseye rash approximately 5 years ago
-Treated with doxy immediately, didn’t matter
-Infection became chronic despite high dose ABX for years right off the bat (treated by LLMD)
-Switched to a more aggressive LLMD who treated with cocktail of three ABX
-Improved but never got passed 90% and always relapsed off ABX
-Started being treated with Disulfiram (slowly ramped up to 500mg) over past 3.5 months (still taking)
-Miracle drug, has all but eliminated my lyme and (mild) babesia symptoms). I’m a believer in the disulfiram hype because it has been so effective for me.

Here’s where things get interesting...

Although my lyme and babesia symptoms have all but vanished, about three weeks ago I began getting a mix of vague symptoms that fit the description of a much more ominous illness...lymphoma specifically

-swollen hard lymph node in neck
-shortness of breath (feels different than my old symptom of babesia air hunger)
-low grade fever throughout the day
-itchiness
-loss of appetite
-drenching night sweats

Clearly these symptoms mimic lyme and company. I’m pretty intune with my body and this set of symptoms feel different. I certainly hope these recent symptoms are lyme related but I’m skeptical....

Which leads me to my actual question that I am seeking help with. I’ve heard that disulfiram is not only effective in killing lyme but tends to rile up old dormant infections and viruses. Is it possible that is what I am experiencing? I am confirmed to have EBV which has been laying dormant for years. And to take it a step further, EBV has been linked to lymphoma. Is it possible that is what I am facing? I have not been diagnosed with lymphoma of course but my regular physician is sending me for various testing as he is concerned about my symptoms.

Thoughts?

I know it’s very easy to read things on the internet and jump to conclusions, but given that you had both Lyme and babesia and never really got better, it seems more likely that these infections are reactivated. All of the symptoms you just mentioned can be caused by these infections.

I’d go and see a dr to rule out lymphoma and make yourself feel better, but my money is on tick borne illness. It sounds like you never really beat it.

When you say that your “Lyme and babesia symptoms” all but vanished, what were these?

Agree with the others that it’s more likely tick born but yes if you need to rule out lymphoma them do so. Sounds very bartonella to me as well.

Lymphoma is not that complicated to rule out, although I can tell you a visit to the oncology department isn't any fun psychologically. Are there any abnormalities in your blood work? I just went through this myself.

Hormones in all sexes include testosterone, DHEAs, thyroid, estrogen, progesterone, cortisol, and others. A previous poster probably was suggesting you get all of these tested, as your levels can point toward some symptoms or disorders that it might be helpful to treat or rule out. Might also be worthwhile to check on your liver.

I'm really glad to hear that you had some relief from illness for a while! Are you seeing an LLMD that you like who can give you guidance about what might be flaring for you? Those symptoms could be lots of things, and lymphoma probably isn't the most likely.

How have your liver enzymes been through the DSF treatment? Itchiness can be a liver thing.

Did the new symptoms all come about at the same time?

NYHenry - Your concern is understanding, and I have been where you are at, minus night sweats and loss of appetite.

As some on this site know, I have gone through the Lymphoma/Lukemia scare three times. That led to two bone marrow biopsies (2012 and 2017) and recent blood smear and many more tests for any type cancers. All negative each time.

I also had a swollen lymph node for months on neck each time. High EBV results for more than 9 months, daily fever in afternoon for about 15 months, and it still happens to a much lesser extent. Had CT scans, ultra sounds, blood tests. All clear. Every time.
If it eases your mind, you might ask for a blood smear to clear and verify any concern for lymphoma. It was stressful each time waiting for results but well worth it to have that cleared. Just thought you might feel better knowing someone else has had near exact symptoms and concerns with negative cancer results 3 times.

Thanks for the replies everyone. Pots I have had labs done throughout Disulfirum treatment consistently and within the last few weeks. All labs are good including liver enzymes. First the itchiness started, shortly after shortness of breath, then just recently low grade fever and sweats.

I hadn’t really considered that I even had Bartonella. Always knew I had Lyme and Babesia but none of my symptoms lined up with Bartonella. Perhaps I’ve had it all along and it was dormant but Disulfirum activated it?

Post Edited (NYHenry99) : 11/30/2019 9:55:45 PM (GMT-7)