Forum Replies Created
June 3, 2017 at 7:55 pm #459327
Maz is so knowledgeable…that’s why I call her aMAZing! She has great suggestions. Again I am so sorry about the issues going on. Keep us posted and let us know if you you have found something that is working or not working. Wendy, keeping you in my thoughts for improved health. SD is a real bummer but at least we have people here who understand. I am so thankful for that.
SunnyMay 29, 2017 at 8:25 pm #459216
Wendy, I didn’t realize you had been dealing with the dizziness for that long! Be careful about falling. I worry at times about that with Dysautonomia (which I have but it is better since I had a treatment for it). So you have tested negative for DILE (The antibody assay- anti-ssDNA & anti-dsDNA). Sorry to ask so many questions but I was wondering if you had been tested for Lyme and co-infections? Many of your symptoms/dx’s are similar to mine. Also, I find that taking Takesumi, Alka-Seltzer Gold, and Epsom salt baths, etc., etc. can help quite a bit to detox. I am so sorry you have been suffering for so long. Please keep up the fight! You are not alone. SunnyMay 29, 2017 at 7:07 pm #459212
I just want to thank you also for sharing your story. I am an SDer (I was with Dr. S. as well) and it was great to read your story! I am so happy to read that you are doing well!
SunnyMay 29, 2017 at 6:55 pm #459211
Welcome Carolyn! I have found Roadback (its administrators, members, etc.) to be a life saver!
SunnyMay 29, 2017 at 6:06 pm #459210
I am so sorry for your issues on Mino! I will share with you my experience with it. I do know that the dizziness is a common side effect. It does pass. I had it for about 3 weeks. Try not to let it scare you. Most of the ppl I know who have taken Mino, have experienced the same dizziness. Regarding your other side effects, have you considered being tested for drug induced Lupus(DILE)? I had similar side effects. I found out 5-6 months later that I had DILE. If that is the case with you, there are other alternative abx. Best of luck.
SunnyMay 29, 2017 at 5:41 pm #459209
Yes, It would be interesting to find out who is funding, etc.
Thanks.May 29, 2017 at 5:24 pm #459208
So sorry to hear that Jaxtee! I haven’t heard of Kliebsiella. I looked it up. I do hope something will come up that will attack that bacteria!! Sending you the best. SunnyMay 29, 2017 at 5:07 pm #459207
I have Diffuse SD. My Rheum from years ago called it salt and pepper spots. With me, they are white spots located on my lower legs and my forearms. They are small, scattered around, and are the same as the normal skin but without pigment. Mine are not raised or indented. They remind me of the white skin you see if you have a scab that is knocked off a few days early. I have noticed that there are fewer than there used to be since I began to treat the Lyme/SD, etc.. They may present differently in each patient. When they were pointed out to me, I became more diligent with applying sunscreen. I haven’t heard of any specific treatment for them. I am glad to hear your spots have greatly improved!May 8, 2017 at 6:05 pm #458951
Yes, I think it has something to do with pheromones.
Each time I got bitten in the last 2 years, the ticks got to me thru the neck hole of a shirt.
A car wash is safer!!!May 8, 2017 at 5:54 pm #458949
I hope you are doing well.Have you stopped the Clindy? Sending positive thoughts.
SunnyMay 8, 2017 at 12:35 am #458941
Yes, I took pics (which was hard to do my myself, on the back!) and left my desperate msg for the good Dr. the evening that I found this. This is the 4th bite in under 2 years! I am so thankful to be his patient as I dont know of any other doctor other than this LLMD that would give me the proper tx. He wanted to know if I could give a description of the tick. I could not as the first one that I saw on my hand that was not attached, I quickly swatted and ran to the shower. I never saw the other two on my back. They must have fallen from the trees I was under, into the open neck of my t-shirt. After scrubbing franticly, I never imagined I got bitten on my back. I understand there is concern for the Pohassen virus year! He has me on Cefdenir/Omnicef 2x a day for 30 days. In addition, I have been on Zith. He said stay on that too. As a reminder, I cant take Doxy & Mino due to DILE. I just hope this is powerful enough. If you have any suggestions, please feel free. I am hoping this does the work. This area by the water here is just full of ticks. I have been seeing them since Feb. This was the first day I have stayed outside longer than a few minutes (because this area is loaded). No one else seems to get bitten (I took an informal poll). I wonder if people with certain pheromones attract ticks the way mosquitoes are atracted to certain pheromones. My brother’s home is at the other beach. The yard is loaded with ticks yet he has no fear because he says they dont touch him (He mows the lawn!). I didnt use my Honey Birch Farms spray because I knew I would get wet washing cars. But I probably should have since I dont have a hazmat suit!May 5, 2017 at 11:06 pm #458928
I was a patient of Dr. S’s. Each time I went to Ida, it was 900mg, 2xs a day for 5 days. One friend of mine who is a patient of his is now doing 1200, once a day for 5 days(he mails them to her). He wont do that high dose with everyone but she has been consisted w him and she wanted to try this dose for the convenience. It has worked for her. He said he would mail them to me this year but I havent rcvd them. I tried to again and was told yes but I have been waiting 3 months. I think he is transitioning his work to someone else. It would be nice to find a doc to do this that would be closer. Good luck!May 4, 2017 at 11:29 pm #458915
And I am thankful for bulls-eyes if we are lucky enough fo them to show up!!
SunnyApril 5, 2017 at 10:37 pm #458459
Phil, thanks for the info on Zithro dosage.
SunnyApril 5, 2017 at 10:35 pm #458458
Wow Randy! I can’t believe they stopped covering the IV’s. I started with Dr. F from Riverside. Are you taking this new protocol for they Clindy everyday with no breaks?Have you been on it long enough to know if it has been as effective as the IV’s? I know it can be brutal on the gut. Would your insurance cover IM’s instead of the oral? I am going to ask my doctor about doing that to bypass the stomach as I have no problem injecting myself. Thanks for letting me know Dr. F’s protocol. I am starting to wonder if I should go back to Mino for a month, temporarily (even though I get DILE from it), drop the Zithro for a month, just so I can get some CLINDAMYCIN in me, then go back on Zith with no Clindy for a month, then do this cyle every other month. What a tangled mess to figure this out! Thanks again. Sunny