I'm going to try and not carry on too much here. It is nice to find someplace where people seem to be speaking my language. I've thought for several years that I may have lyme and/or some other tick borne illness, but remain seronegative.
I've had kidney and bladder problems on and off since 1978, including pyleonephritis and numerous UTI's, so often I can't remember how many times. Last year I had over a foot of my colon removed, all of the sigmoid and part of the decending, from "chronic diverticulitis." I was diagnosed with fibromyalgia, tested for all the autoimmune disorders there are out there, tested for lyme and all kinds of yucky stuff. With the kidney involvement, my UA showed bacteria, but nothing would grow in the culture. Over and over again, these things happen, the colon thing being the worst and scariest yet. I've been told I have herniated discs, but then they go away. I have lumps, bumps and all kinds of things under my skin, swollen lymph nodes everywhere and when I'm hurting real bad, my skin will feel like it has ranging from bird shot to grapes under it. I can have a day that I'm so bloated and swollen in my whole body that there can be up to a 14 lb difference from morning to night. . .
Numerous other very strange things. Two times through a chronic pain program. Tested for RA, lupus, MS, lymphoma, ec., etc., etc. All negative. High blood pressure, sugar, cholesteral, triglicerides that go up and down randomly with or without meds or diet changes. Patted on the head, given pain pills, offered antidepressants. Months on end with not many symptoms at all and than whammo, here we go again, and I always have long periods of time that I feel good after being in the hospital on antibiotics and then for weeks after, for instance, flagyl, levaquin, cipro, keflex, amicacin, and some other real bigges. Then it just creeps right back up to being yucky again, this time, the worst with the swelling and the lumpy bumpies.
Anyway. . . my main question: I have these lumps and bumps throughout my body, but they seem to want to be mainly in my knees, especially on the back, in my rib cage all over and in my hips and inner thighs. I keep reading about cystic forms of lyme or other spirochetal infections, but they are all on the microscopic study level reports. I want to know if anyone here, with confirmed late lyme, has these under the skin manifestations. Since Monday, my knees, elbows, etc., have got to be at least two to three inches smaller in circumfrance and the lumpies are smaller. If there are already threads in here somewhere, which I will continue reading to find on my own, please let me know. Any help and insight will be appreciated.
Sorry to carry on, but I'm so sick to death of being sick. Thanks, Moosie
-------------------- Trying to figure it all out. Posts: 38 | From Spanaway, WA | Registered: Sep 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Moosie,
I have had alot of bumps from swollen lymph nodes, which have persisted for years. I was just diagnosed with late-stage lyme this summer, and started treatment in july, but have certainly had it (and a couple of known tick bites and bulls-eye rashes) at least about 10 years.
My lymph nodes got bumpy after I got lyme. Have some other mysterious bumps and cyst like things too.
I hope you feel better -- get a good LLMD and stick with them for 6 months, to see what they can do in working with you!
Posts: 2557 | From home | Registered: Aug 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hi, Moosie!
I'm really sorry you're going through all that, but when I read your post, it all sounded really familiar to me.
For about a year, they thought I had bladder cancer, but further tests never showed anything. Then endometrial cancer (going through that for a second time). Again, negative.
I do have lumps, but only two, and they're relatively small. I have no idea if or how they might be related to the cystic form of Lyme and am hoping someone else might know. I had swollen glands for several years prior to my Lyme diagnosis, ant after a year of antibiotic treatment, they're finally starting to go down.
I know you said you tested negative for Lyme but I was wondering where you had the tests done. Those done in mainstream labs are notoriously inaccurate, and if you haven't already, you might want to think about sending your bloodwork to a CA lab, Igenex, for a second opinion.
Hope you're able to get some answers; it's good to have you here.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Thanks folks. I had just regular conventional testing for Lyme. My husband, who is a nuclear physicist and rocket scientist, has many connections and free use of a scanning electron microscope. He's conferring with a microbiology specialist to find out what medium he needs to grow the bacteria and will conduct his own study culturing both my blood and my urine. He has all this stuff, same as you would get from Igenex, right at his disposal. The SEM far exceeds the magnification of any typical medical lab, so maybe, we'll find something ourselves.
We all have such similar stories. I was told so many different things - endometriosis, ovarian cancer, bladder cancer, etc., etc., etc. Only "real" things that ever have been found in all these years has been the diverticulitis and kidney/bladder infections. Now these dang lumps!!!
Thanks again. I'm already learning and gaining much from finding this place. Moosie
-------------------- Trying to figure it all out. Posts: 38 | From Spanaway, WA | Registered: Sep 2006
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posted
I don't know if this is helpful or not. When I first had Lyme in 1999, after Rocephin and I had lost about 30bls., I had many squishy lumps all over my legs and arms. Dr. Wormser wanted a biopsy of the lumps. It turned out to be just fatty deposits with nothing significant in them, or so the surgeon said. Eventually with time and gaining back some weight, the lumps disappeared. Laczi Tag
Posts: 121 | From Sarasota, FL | Registered: Oct 2000
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posted
Just wondering your husband to culture and do your own testing is this because you have not had a positive test?
What about trying The Bowen test which uses a Darkfield microscope and flourescent staining. It provides a picture of the Spirochetes in the blood as opposed to antibody testing. I have not had this test but others here have and could give you more information. The test costs $250.
Posts: 465 | From New York, NY | Registered: Aug 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hey Moosie, sure sounds like there's a strong possibility it's lyme. Might have some bartonella or other tick-borne co-infections going on as well.
All of your symptoms are not that uncommon with lymies. The bumps aren't all that uncommon either.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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The Bowen Test is exactly what my husband intends to do, maybe culturing, maybe not, because of his access to an electron microscope.
And we are doing this because all my other testing has come back negative.
However, back in 1979 when I for the first time had a really bad kidney problem, they found "sprirochetes". The assumption then was that I picked up something in Jamaica after living and working there for 18 months, and the implication that it was sexually transmitted, which no way it was at the time, believe me.
I was treated with Keflex, flagyl and amicacin and it took two and half years to get it to go away, and surgery to open up my bladder and urethra.
I've had four more incidents like that since then, acute pyleonephritis, about 5 or 6 years apart from each other, the last in 2001, but I honestly think my colon problem in 2005 was totally related to this junk.
IN the 2001 incident, NOTHING showed in my urine at all other than positive for bacteria, trace RBC and a WBC of 19,000 (my record is 22,000 in 1979). Nothing grew in the culture. I think they had the wrong food for these little critters.
I think it may have been Lyme, even back then, in hindsight. With getting older, it's getting more and more difficult to bounce back from this big blowouts, my 2005 incident being literally that. I had a pocket in the sigmoid that was six inches in diameter that blew out, just like a blown tire. It was called chronic diverticulitis, but I really wonder.
Again, thanks. I know I put alot of words in here real fast. Like Betty, I was a legal secretary for years, type 124 words per minute when my hands aren't stiff. Hope these paragraphs are better in size. That's much faster than I can talk or even think sometimes!!! Take care. Moosie.
-------------------- Trying to figure it all out. Posts: 38 | From Spanaway, WA | Registered: Sep 2006
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That's much faster than I can talk or even think sometimes!!! Take care. Moosie.
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