I am not sure what to focus on in this post. Any assistance on any of the topics would be so appreciated.
1. I am currently being treated with 2x daily amoxycillin suspension and 3 days on/4 days off of tinidazole per my LLND. The amox helped me over the summer when my LLMD treated with it before I started the tinidazole. The amox susp put the peripheral neuropathy into remisssion. Though it came back a week or so after I had finished taking the amox (about 7 weeks of amox). Now neuropathy is becoming less again with the amox/tinidazole. Anyone have experience with tinidazole causing herx? Has it helped anyone?
2. The LLND added next step to the protocol teasel root and a lyme support formula, both of which she said to start out very slow due to herx potential. Was up to 2 drops each 2 x a day, then started feeling awful. LLND said to back down to lower dose. Now I am one drop once a day and feel lousy later on in the day. Anyone have experience with this sort of reaction?
3. Apparently I had a UTI this summer even while on the amox. MD prescribed Keflex and the symptoms went away. Now I have the same symptoms but they didn't respond to Kelfex. My GP thinks it is something else. Had a sonogram yesterday and seeing a urologist Tuesday. Intersistial cystitis was one thing mentioned as a possibility. Anyone heard of this as another lyme thing or fallout from lots of antibiotics?
4. I am trying to sort out what is/are the sources of having recent episodes of worse symptoms and new symptoms. Any thoughts?
Please feel free to PM me.
Thank you everyone.
Posts: 46 | From USA | Registered: Nov 2015
| IP: Logged |
PS .. Flagyl or tini can cause neuropathy or nerve pain .. in addition to depression. Go easy or speak to your DR about suspending it if you are thinking it's making you worse.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Thank you for your response. I am sorry that IC ended your teaching career. Do you still have significant problems with IC?
I read Dr Afrin's book this summer. My LLND thinks that I have MCAS. So in addition to my low histamine diet she has me on H1 and H2 blockers and Histaquel. I sometimes also take Histamine Digest with DAO.
She had me take a mycotoxin test but the results did not indicate a problem there. So that leaves lyme as the likely cause of the MCAS.
Just like Afrin's book title Never Bet Against Occam, I have a feeling that this pelvic problem was somehow related to lyme.
Tinidazole is a go to for my LLND for the cyst form. Which my LLMD never seemed to address. He is still my prescribing MD though. Because my LLND can't prescribe unless I see her in her office at least once in a year. Since she is on the opposite side of the country that is not very doable.
Thank you also for mentioning that the tini can cause nerve issues and depression. My LLMD did warn about possible anxiety and insomnia.
I wonder what else my LLND may have me take if the tini is the source of some of the unpleasantness I've been feeling.
Posts: 46 | From USA | Registered: Nov 2015
| IP: Logged |
posted
I have not heard of cromolyn sodium before your post. I would be interested in learning about it and what it helps. May I ask you for any links to info?
I saw the urologist on this past Tuesday and he is sending out a specimen for further testing for inflammation. I guess that will show if I may have IC.
Also, you said that you have not been in treatment for lyme in quite a while. May I ask you how you got past it? Please PM me if that is a better option at this point.
Posts: 46 | From USA | Registered: Nov 2015
| IP: Logged |
posted
LuBee .. I was treated with antibiotics from 2000-2004. Beginning in 2005, I began using an EMEM5A Rife machine to keep me healthy.
I stopped seeing my LLMD in 2009.
I started having mast cell symptoms in 2014 and was diagnosed in 2016. That is when I began cromolyn. It's a prescription, so you can look it up on drugs dot com.
It's very expensive unless you have a good insurance plan. I do and it only costs me $5 a month.
There is a definite connection between MCAS, Lyme and IC. You may want to check that out.
posted
It seems like you are doing much better than many years ago. If so that is very wonderful, and encouraging for those in the midst.
Thank you for the link. I read the info in the link and realized that I had heard of cromolyn when I read Dr. Afrin's book this summer. I checked and my insurance doesn't cover it, but by using GoodRX Gold it is a more manageable amount. I was also reminded that he recommended water soluable quercetin which he said was very effective. I take quercetin but it is not water soluable. The best I could research was that quercetin phytosome may be what that is.
At this point I don't have a diagnosis. The urologist office didn't bother to let me know that the doc wants me off the amox before he submits a urine sample to lab. Good thing I called them today and found that out. I will have to figure something out once I hear back from the doctor about how many days off the amox I need to be.
The amox is taking away my peripheral neuropathy, just like when I took it for seven weeks this summer. But after stopping the amox the neuropathy came back. Now that I am also taking the tinidazole and a biofilm disrupter I am glad that the biofilm and cyst form are being addressed.
My pelvic symptoms are discomfort and more pain when my bladder is full, pelvic pain and lower back pain. No pain when urinating, and only mild "urgency". Are/were your IC symptoms similar?
The ultrasound of my abdomen and pelvic area showed no abnormalities, which was a relief for that at least.
Posts: 46 | From USA | Registered: Nov 2015
| IP: Logged |
posted
Thank you for your all your helpful responses. When I read about IC symptoms the list always included painful urination. So hearing about your experience is so helpful.
Having your symptoms managed is very good. Life can be lived without being soooo focused on symptoms, syndromes, and disease. I am looking forward to that time. Posts: 46 | From USA | Registered: Nov 2015
| IP: Logged |
Thank you for the links. I hadn't realized all the medical articles out there on d-mannose. We had my elderly mother taking d-mannose for recurrent UTIs. Finally it just wasn't enough and she is now on prophylactic antibiotics. The danger for her with UTIs is that strokes can result, which happened to her.
In my case the urologist feels that the issue is not UTIs based on the negative cultures. But will be testing yet again for that and other things. So should UTI be the issue it is good to know about the research on d-mannose. Posts: 46 | From USA | Registered: Nov 2015
| IP: Logged |
She was admitted to the hospital a couple of times for UTIs before we recognized the signs. Do you think hospitals would check for that when they do cultures?
Her doctor has had her specimens' cultured too and I don't know if the usual labs test for that.
My mother is incontinent and that makes things challenging.
Posts: 46 | From USA | Registered: Nov 2015
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic