I've given up on trying to find someone else with my specific disease, but hope someone can relate to this particular concern of mine.
Most of us with lyme are already fighting a monster with many heads, aka coinfections. What happens when there's another monster? What if that monster causes some of the same symptoms and there is NO CURE for that monster?
I'm not talking about another disease that could be a symptom of lyme and co, like MS or fibro or similar. I'm talking about something like cystic kidney disease or something else genetic or functional, not related to pathogens.
So, supposing you kill off lyme and co, you still have this other disease to deal with. And you will never know for sure if you really got rid of TBI, because what you suffer could be from the other disease.
Neither doctor I deal with believes my diseases are related (including the LLMD), though a website for my other disease says "inflammation from chronic infection" can cause it to progress faster.
So, just wondering if anyone else has some of the same dilemmas. I wonder whether I should bother treating the lyme, to feel so crappy now when someday I will feel 1000x worse when the other disease gets to the point of needing invasive treatment. And I'll probably just keep reinfecting with lyme because of where I live.
Please respond if you can relate. I continue to spiral downward, after two months of abx and supplements, and am already frustrated that I don't know if it's herxing or the lyme just continuing to progress and eat me up. Or if the other disease is eating me up. Or if they are feeding off each other to slowly kill me.
My LLMD told me not to worry about individual symptoms, that stuff will come and go. Well, some really scary ones started after starting antibiotics. Having the other disease makes me really fearful about any kind of weird symptom.
I want to keep my awesome job, but it requires me to think clearly and be creative. I want to be a great mom and wife, but this fears are all I can think about now and how I have some kind of appointment or test every week. I was coping pretty well until my new diagnosis. Now I just want to go to bed and never get out.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Hard to answer your question as you do not name the disease.
Sure some can be because of lyme or the same f.e. cysts in the kidney, maybe stones,... lung problems lupus varicose veins or other vein diseases
I think there is not a generalized answer, it depends on the other disease if it could be related to lyme and co or if lyme and co could induce it.
Please pm if you need more help.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Definitely not rhetorical, and I really didn't think the disease matters because I'm just looking for someone who can relate to the situation. I figure with as many people as are on this board there's got to be someone.
I have PKD (polycystic kidney disease). At some point I will likely need dialysis and then a transplant. It is already progressing faster than is typical. I am trying not to think too much whether lyme is causing this because apparently there is zero research in that area.
I just wondered if anyone could relate to the feeling that treating lyme might be pointless if when it's over (if ever) you still face miserableness.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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posted
I have a child with celiac. She also had acute Lyme and was treated immediately for it. She continues to have some digestive problems.
Because of the long-term diarrhea before celiac was diagnosed, she has a number of nutritional deficiencies we are working on correcting.
So I do wonder if we fully eradicated the Lyme. Or if she is being exposed sometimes to bits of gluten. Or if it's just generalized bowel flora issues (hello, many weeks of amoxicillan, I'm looking at you!).
If she has no residual Lyme issues, the last thing I want to do is give her more abx to further mess with her already extremely sensitive gut. And yet, perhaps it is still an issue?
I'm much more comfortable experimenting on myself. My child, however... I mean, she's three. I don't want to cause any damage to her body, just because she has a confusing, overlapping symptom medical history.
So although we are not in your exact situation, I can relate to the complex medical history, and knowing that not everything can be treated.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Please get information about parasites, they cause cysts in kidneys. Sure other things can also cause cysts but the parasites can be treated with herbs. I will send you a pm.
Posts: 1834 | From US | Registered: Oct 2008
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
mycoplasma pneumonia, the "chronic fatigue" germ
Posts: 1954 | From Illinois | Registered: Aug 2007
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Suzy, I found information on the man you mention. He certainly seems to be an expert on mycoplasma. I could not, however, find where he connects it to PKD.
Suzy, Karen, and Cheryl, I will definitely be bringing up the myco (which I have tested + for) and parasites because I don't know that my regimen targets these. Karen, I look forward to your pm.
I have read a bit on this site lately about parasites and will definitely be asking the LLMD whether some of the supplements I've read about would be safe for me, that is if I should treat for them. Gosh, I hope it's not another "take two hours away from other supplements" deal. There's not enough hours in the day!
True PKD is inherited, in the DNA--not caused by a bacterial, viral, parasitic, or other agent. It has no cure. Only about 50% of patients need dialysis by age 60; I just am fearful I will be on the losing side of that stat much younger.
Yet I do suspect these infections exacerbate the condition (based on my experience only, haven't found anyone else to talk to about it). I have read that infections can cause other cystic conditions as well.
Garden, thanks so much for sharing yours and your daughter's experience. That is exactly my frustration--that neither my LLMD or I will ever be able to determine what is causing the overlap symptoms and I could either treat not enough or treat unnecessarily forever, feeling worse the whole time.
Wishing everyone wellness,
sbh
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I finally figured out that I apparently have a mild form of Hemophilia. The doctor who diagnosed me called it "Factor VIII Deficiency" but did not call it Hemophilia, so I never connected the dots before yesterday... But apparently it runs in the family because my Grandmother also had the same kinds of bleeding issues that I do.
So in my case, I get some strange behaviors with bleeding/coagulation. I show roleaux on dried blood smears, but my bleeding time is prolonged (for the test, they made a small cut on my forearm and timed how long it took to stop bleeding). I also have an elevated PT, and have had abnormal INR at times. And strangely enough, I also have an intermittantly positive Lupus Anticoagulant, which can cause blood clotting...but I've never had a blood clot. I get spontaneous nosebleeds, but then don't usually bleed very long after venipuncture (for blood tests). Quite confusing. And I have to wonder what role, if any, Lyme plays in my strange bleeding/coagulation issues...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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posted
Oh wow, Razzle--there's a lot of new terms for me in there.
It sounds like you can definitely relate, though of course with a completely different issue. It's frustrating to wonder and know that no one has an answer, and because no one can relate, isn't it?
Hopefully at least we can get this lyme and co blasted away--that would be fantastic. I see you've had it a heck of a long time.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I went to my PCP Tues. I had scheduled a long visit. I had my usual list. The only thing we didn't get into because I'm going back soon is my kidney pain that waxing and waning.
I had severe lower back pain a year ago. I had a chiro giving me exercises and blah, blah blah. Couldn't do back exercises because it made my pains sharp.
Went to gyn for yearly the next month and mentioned I had back pain for 2 mths and they did urine test and I had blood in my urine.
I was taking Rifampin at the time and had been for a couple months. Gyn gave me UTI abx and sure enough the lower back pain disappeared.
Off and on for a year this strange pain keeps coming back. I need to have it looked at but I found out in Feb that I have an auto-immune disorder called Hashimoto's.
So I needed a endrocrinology specialists? Check!!! Now I need to focus on kidneys.
I have high titers for mycoplasma pneunomia and have for 2-3 yrs. Rifampin is suppose to be abx that attacks this myco and the same time I'm taking it thinking it's helping myco and I'm really going after bartonella.
So until proven otherwise...IMO Rifampin stirred up the myco or bart and it's local hang out is my kidneys.
I hate the idea of another specialists. How many specialist before everything gets muddled by all these opinions?
I might have my PCP order my tests, he's been with me since '98 thick and thin. We will keep kidney doc out of pic unless we find it's needed.
I hate giving all my history for 12 yrs + to another lyme illiterate doc. Between my PCP, eye doctor, endro and my dear nun that does bodywork on me I've been in medical office 20 times since Jan 1st. Next month I see my GI/colon specialist????
GI/colon is another big sx for me. I have IBS and gastritis which causes constipation issues which causes hemorroid issues.
So I can relate. It's all related to lyme & co.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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quote:Originally posted by sbh93: I just wondered if anyone could relate to the feeling that treating lyme might be pointless if when it's over (if ever) you still face miserableness.
I can, sbh. I had severe illness for many years before I got the tick bite that caused Lyme disease, and before I got the additional exposure to bartonella and mycoplasma from a cat and some people I was around with walking pneumonia. Even after I treat these infections, that disease will still be there, and I'll still have to deal with it. The symptoms are nearly identical with a few patterns that make it different.
However, I do not think treating is pointless at all. I could never call treating a fatal infection, pointless. I am still improving on antibiotics, though I wonder when I'll get to the point of not needing them, or how I'll even know I'm there. I guess all we can do is get to the point where we think we can stop, and do so. If we start to decline again, I guess we'll go back on the antibiotics and see if they help once more.
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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posted
Hi Pam, oh man it's like a full-time job going to all these specialists! And then keeping the information straight. I misunderstood my last LLMD appointment and was apparently supposed to get bloodwork done... they called me wondering if I'd gone and now there's not enough time before the appt. and i can't decide whether to reschedule.
Hi little olive, I'm sorry you're also dealing with another illness. I wish it wasn't so. I'm glad to hear you're still determined to fight lyme and co., and rationally I know I should too. I'm just really bummed knowing that I'll have chronic pain for life regardless. And then I find out some of my other major symptoms could also be the PKD and not lyme (vertigo, migraines, GI stuff).
Blech.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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