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904511 tn?1251219733

Link between Lyme and Multiple Myeloma???or MGUS??

Hi,
  i have had a positive IgM CDC and WB.
                    positive IgG  WB and negative CDC by one band.
I have chronic Lyme symptoms, all the way to chest tightness and sharp pains through my chest cavity. My area where your kidneys and Liver are feels swelled and hard to move.

BUT, the doctors besides my LLMD(who is in another state), wont treat me for lyme becuase according to CDC I dont have the right symptoms. We all know that is a load of crock. But we did another lyme test through a basic lab and what do you know it was negative. So my insurance wont cover lyme treatment anymore, or anymore testing.

Now I have a positive Rheumatoid Factor RF and my SED Rate, CRP, and Globulin are all eleveted.

Plus I got a positive test for Multiple Myeloma (plasma cancer). I dont know if it is the test that is reliable or not reliable for this cancer yet. But I go in today for more tests.
i have been on the cancer forums at different sites and I am seeing many indivuals with both Lyme AND either Multiple Myeloma or MGUS. And MGUS is like the same type plasma problem just with out the major complications and no cancer. But I dont think this test is positive for MGUS.
Anyhow I was just wondering if any of you lymies have came across this also??
20 Responses
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Avatar universal
Gosh, this is the first I've heard of this situation -- so I don't have any advice or comments, unfortunately.

Maybe find a local LLMD?

Good wishes to you -- let us know how it goes.
Helpful - 0
237053 tn?1258828426
Wow.. sorry you are having such a hard time.  I would definately pay out of pocket for a LLMD in your area.  It's a lot of money, but it is your health.  I've never heard of Multiple Myeloma, so can't help there.  I think you REALLY need to get in to some specialists and demand treatment of some sort.  

What are your symptoms now?  

I feel so bad for you, and wish I could be of more help.

Hang in there.  Let us know what you find out...
Helpful - 0
904511 tn?1251219733
Thank you both of you. You have been so much help and your support is really helping me through this a lot. Well my symptoms have changed a bit. Lot and lots of headaches, nausea, not really any muscle aching or pain anymore, my muscles will just get stiff and stoved up. But my bones and joints have been killing me! And it hurts in one spot for a few minutes and then it will jump to another part of my body then hurt bad there for a few minutes.
Now I'm getting chest pain and it almost feels like my insides are swelling up and they are all pushing up against themselves. Strange illustration but I dont know how else to explain it. Then I'll get really sharp strike of pain that will shoot all the way through my chest to my back or vice versa.
The headaches are really strange too, they are sorta like a caffine headache, but really pressurized. Like my brain is a ballon that is getting blown up too much. Like it's pressing up against my skull. It's quiet strange. When I get them, it makes me feel almost a little passed buzzed. Like the point right before you slip from feeling the alcohal to being drunk. Everything is a bit woozy and unstable, and my sensations and reactions are slowed. It's very strange.

Anyhow my doc said that my results dont make sense to him and refered me to a better rheumy, and I am rounding up the money to see another LLMD here in Arizona. We could be leaving for Hawaii, (getting stationed there) any week now, so I dont think ill be able to start treatment here, but the sooner i get a diagnosis the better.

My gut tells me that the whole thing is lyme disease. Now I just have to prove it.
Helpful - 0
237053 tn?1258828426
I don't feel you need "to prove it".  You already have proof... a CDC pos lyme test.  This makes me so mad.  Why hasn't anyone treated you?!?!?!??   Atleast a trial round to see if you herx or if you improve.  Maybe you could ask your dr to do this.  It's worth a try and may save some time and money in the long run.  

Let us know.
Helpful - 0
Avatar universal
My uncle, Darren Preston, was hospitalized in the late 80s or early 90s and was told by his doctor that all his symptoms were that of lyme disease, but he didn’t have the money to do the test for it.  In 2008 Darren was diagnosed with multiple myeloma at the age of 42 and passed away at 45 January 2010.  His wife Atonka Preston informed me they were told of a doctor in Arkansas (who had multiple myeloma himself) that had been researching a link between lyme disease and multiple myeloma.  They were never able to find out who the doctor was, nor did they find anyone who could validate the story.  This may not be much help, but hearing that there are more people that have both diseases might raise awareness enough in the medical community to have the link looked further into.  You have my prayers. Good luck. And if you need any more information fell free to contact me at brian.***@****  My aunt Atonka might be able to tell you more details if you’re interested.
Helpful - 0
Avatar universal
I have every symptom exactly as you describe, most recently I was diagnosed with MGUS from bloodwork however MGUS does not have any symptoms.  I have all of the symptoms for Multiple Myeloma but my numbers are not high enough for that diagnosis.  I am very frustrated and the only relief I can get is from doxycycline.
Helpful - 0
Avatar universal
This all sorta fits in with what I posted previously about the polio vaccines that were contaminated with SV40.  Search SV40  myeloma and you'll see for yourself.  Although their intentions were good, it is written that God makes the wisdom of man foolishness.
Helpful - 0
Avatar universal
Hi.  I saw your post.  I don't know where you're located, but have you been tested for Lyme Disease before?  If you'd like some suggestions on how to proceed, let us know some more about your history and experience with doctors so far.  
Helpful - 0
Avatar universal
Hi,
I was diagnosed with MGUS by chance in UK in 2012
I've got late stage lyme (infected in 2000), bartonella henselae and although neg.test result, I also suspect  I've got babesia (based on symptoms). Old viruses in my body like EBV,CMV, Coxakie, also high IgG titres in 2012, although I had glandular fever in my twenties (I'm now 46) so long time ago.
When I got the MGUS diagnosis, I suspected lyme and co-inf. as the 'causative' agent, somehow bartonella particularly as I believe it goes to bone marrow/messes with my red blood cells (I unfortunately cannot prove my view).

I would really welcome research and statistics about lyme and/or co-infections and MGUS.
With my ill health I cannot prove the link, most UK doctors don't know about lyme, even less about co-infections, and many don't accept IGenex lab results...
Helpful - 0
Avatar universal
Hi,
I was diagnosed with MGUS by chance in UK in 2012
I've got late stage lyme (infected in 2000), bartonella henselae and although neg.test result, I also suspect  I've got babesia (based on symptoms). Old viruses in my body like EBV,CMV, Coxakie, also high IgG titres in 2012, although I had glandular fever in my twenties (I'm now 46) so long time ago.
When I got the MGUS diagnosis, I suspected lyme and co-inf. as the 'causative' agent, somehow bartonella particularly as I believe it goes to bone marrow/messes with my red blood cells (I unfortunately cannot prove my view).

I would really welcome research and statistics about lyme and/or co-infections and MGUS.
With my ill health I cannot prove the link, most UK doctors don't know about lyme, even less about co-infections, and many don't accept IGenex lab results...
Helpful - 0
Avatar universal
I doubt if there will be any 'formal' statistics about a connection between Lyme and MGUS since the 'authorities' that collect statistics hardly even recognize Lyme disease!

There are many instances where people who have Lyme and MGUS make some good guesses about the connection but nothing that a doctor would consider.

Making a guess here---- because Lyme is known for being a cause for  problems or failure in many different body systems why not blame it for MGUS? Treating for Lyme has 'mysteriously' helped people with MS, neuropathy (one of the symptoms listed for MGUS), jaw pain or TMJ, 'arthritis', even ALS in some cases and the list goes on and on.

But I simply don't know. I've not read much about MGUS and I don't personally know anyone with it. But I'm going to keep on looking for something definitive about it.
Helpful - 0
Avatar universal
Have you gone to a site in the UK that is pretty good for Lyme discussion? I can't give the url here (against the rules) but if you want the name I can send you a private message. Let me know. At least you might find a UK doctor that does treat for Lyme there. Maybe.
Helpful - 0
Avatar universal
Hi and thank you. I'm a member of that UK discussion group. I also sent to the UK LDA a question recently about the tick borne diseases and MGUS, eg if they have heard of other similar cases. I'm on abx treatment for lyme and bartonella henselae at the moment, but it is a long and windy road and the extra challenge of MGUS doesn't make it easier.
all the best wishes
Helpful - 0
Avatar universal
Good to hear that you're looking at the UK discussion group and UK LDA.  I hope they might be able to help you---- or at least direct you to a site/doctor who can help. Maybe you've been to BADA also?

Good luck.
Helpful - 0
Avatar universal
I have exactly the same bloodwork and symptoms.  MGUS with Myeloma Pain.  I am at 5% and they will not treat fro Myeloma until I reach 10% (at that time it is a terminal incurable condition)  Please advise of your current status.
Helpful - 0
Avatar universal
Hello, I am a Lyme patient with MGUS and with Myeloma pain. I have also Erlichia, Yersinia ja 2 Clamydias. I wisited BCA klinic in Augsburg in may and get a treatment plan. I have got 8 months iv ab treatment, mostly Azithromycin, I have a hematologist, who looks after my blood tests. My condition was very poor in january to mars. Then slowly I begin to eat more and move a bit more. Mostly I liend in bed. I have neurological symptoms, spasms ext. Bone and muscle pain is very bad.
Helpful - 0
Avatar universal
There has been a legal precedent case set for the treatment of Lyme. The details were posted January 23, 2014

CASE #09-CV-1039MCA GLIBOWSKI VS. U.S. OFFICE OF PERSONNEL MGMT.

http://www.gordonmedical.com/unravelling-complex-chronic-illness/legal-precedent-set-for-coverage-of-lyme-disease-treatment/
Helpful - 0
Avatar universal
Hello. How are you doing these days? I ran into your post because I was looking into the possibility of Lyme and Multiple Myeloma being related. I have Lyme and I'm currently treating for it but it may be that I have MM. I have similar symptoms as you. I have rib and lower back pain. Sometimes it shoots between my shoulder blades and even hurts to breath.
Helpful - 0
Avatar universal
I also have a strange feeling around my liver area
Helpful - 0
Avatar universal
I was treated for Lyme in July of 17. Two years later I had similar symptoms of lyme and thought I was reinfected. Turns out I have MGUS too. It seems to be pressing based on symptoms. My blood work is ok (mspike .2) but lambda light chain has been steadily going up. Last check up it was at 26.8 (26.2- high end of normal). I’m seeing my hematologist/oncologist in two weeks. I believe my Lyme disease triggered my MGUS. I believe I have a chronic infection (lyme) and it is creating or triggered the m protein.
Helpful - 0
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