Hi everyone! Thanks for letting me join. I have a few questions hoping to get some insight on. I lived in Georgia from 2008-2015. I often went for walks on a nature trail we had. Don’t remember ever getting a tick bite or having a typical bulls eye rash. I started having weird things happening when I got pregnant with my son in 2013. Here are how things started:
October 2013-December 2013: weird yeast infections that wouldn’t go away until I treated it with jock itch cream.
2015: Had 2 sinus infections, mastitis, thrush and was getting colds every 2-3 months. (Weakened immune system). Was on antibiotics 4x last year.
Sorry submitted too early. I meant to specify 2014.
Feb 2015: I thought I was getting a UTI and was diagnosed with a bladder autoimmune disease called Interstitial Cystitis. I am on a bunch of medication for that now. Since that diagnoses I have been depressed, had anxiety, there was a week I woke up in panic attacks and sweating. Now my neck hurts and I have headaches in the back of my head
Also wanted to mention I went to the doctor for a suspected sinus infection a couple weeks ago and he put me on a low dose long course of Augmenting (3 weeks) and I went and saw an ENT who did a head CT scan which showed no infection and everything was normal. I have had 2 x rays and an abdominal CT scan this year also and all that showed was my bladder was inflammed. Now they want me to see a neurologist about these headaches because they don’t know why I keep getting them. It could be a side effect of my medications. I also have a weird pain in my right hip that comes and goes and I am seeing a physical therapist for that and pelvic floor dysfunction. I have an appointment with an infectious disease doctor on the 30th so she can evaluate me for Lymes. I researched Lyme literate doctors but I can’t afford one since they don’t take insurance. What do you all think? Am I being paranoid? Do my symptoms match Lymes? Someone said bladder problems are considered late stage Lymes and I’m thinking I would feel worse off right now if that was the case
I see nothing that even hints at lyme, Rshell. Yeast infections are really common during pregnancy, due to higher levels of estrogen. Interstitial cystitis may or may not be associated with autoimmune disease, and may resolve on its own with some simple dietary changes. I am not sure how you landed on lyme, and my concern is that you may come across a practitioner who will hand out a lyme diagnosis (and antibiotics) to anyone who comes through the door, as some do not wait for a whole lot of evidence before starting to treat lyme, and the treatments are not risk-free. Full disclosure: I have had every symptom you describe, and have never been diagnosed with lyme. I wonder, has parenting been stressful for you? Because being an anxious new mom lends itself to paranoia sometimes. It did for me. Fortunately, kids get older, and life gets more relaxed.
I just remembered... I had a terrible sinus infection when my kids were babies. First time I ever had one.
Dancermom: I appreciate your reply and actually feel relieved you confirm perhaps I am over stressed and being paranoid. I think I got lead to Lymes because someone who had IC mentioned that they had IC because of Lymes. Also a friend of friend said she had Lymes and my symptoms sounded “mysterious” and I should get tested. I am very stressed and overwhelmed. When I got my IC diagnosis my husband and I were in the middle of a move for his job that left behind all our friends and family. I have a 4 YR old and 1 YR old. Anyways sorry if I came on here sounding crazy. I just felt scared that if I didn’t get an opinion on it that I would regret it.
I understand completely why you would be alarmed, Rshell. And a 4 year old and a 1 year old together can make anyone quite frantic. I don't think you are crazy. My husband changed jobs too in those early parenting days, and we too moved to where we had no family. It can be very stressful not getting a break from parenting. Next year is kindergarten, and things should be quite a bit easier. Yogurt may help with the thrush and candida infections. I hope you feel better soon. :)
Thank you so much Dancermom. Researching online has made it very confusing. There seems to be two sides and opinions on it. This friend of a friend who has been diagnosed said that only a naturopath or Lyme Literate doctor can treat you because the “politics” between some general practitioners and the LLMD’s that a general practitioner will not help you. I researched it and based on my lack of corresponding symptoms to typical Lymes and the cost of the LLMD I decided not to make an appt. I’m just curious, what type of protocol is the basis for a diagnosis? Does this site endorse the CDC guidelines? Do you know why there is such a divide of opinions with this disease and the controversy of chronic Lymes? I feel like worried for my friend’s friend.
*a little worried for my friend’s friend
You are a thoughtful friend, Rshell. The lyme issues are very complicated. It is clear that there are people who remain ill after initial antibiotic treatment for lyme. There are some who theorize that they remain infected and will get better from long-term antibiotics. However, thus far, clinical trials have not shown any benefit to long-term anitbiotics over a placebo. This site is evidence-based in its focus. We are in a unique position as an organization with 30 rare disease communities, as we have an opportunity to learn from patients who have many different conditions. What concerns us is that there are many who arrive at this community with no actual evidence of lyme infection, some of whom have never lived in or visited an area that has ticks infested with lyme, who have been told by LLMDs that they are infected and started on antibiotics. Read the Lyme and PTLDS tab above, as well as our discussions about Igenex and Coinfections.
We do not dismiss the health concerns of anyone on this community, however. Chronic illnesses often have a long road to diagnosis.
I totally understand. I looked to see if you guys had a group yet for Interstitial Cystitis but there is none. However I have been told by my urologists that my condition is quite common. But it has its set of challenges so I really empathize with people who are desperate for help and answers (hence me coming here). I am glad I was led to this site. I was on the fence about setting up all these costly appointments and my gut told me (in my case) it didn’t make sense. Perhaps I can mention this site to my friend?
Yes, certainly. We have had a few requests for an interstitial cystitis group. Since it is common, the worry is that we might wind up with 30,000 members and not have the volunteer power to properly manage it. But maybe one day. Cutting down on caffeine and other bladder irritants can help.
I have and it has helped. I am seeing a good urologists and am on appropriate meds. I am improving. Some days are harder than others but this is just my new normal. I am part of an online support group for the IC that is really great. But if you guys ever open a forum for it I will join. People like you and this site are making a big difference to many people who need help and support. Thank you again.