I ws at my new LLMD yesterday, and besided Lyme and Co. since 2003, was just now diagnosed with new co-infection, Rocky Mountain Spotted fever. and also active Micoplasma.
Has anyone dealt with RMSF along with Lyme and Co?
Were you sucessful at treating it and how?
My LLMD says 2x weekly IV Zithromax tx. I have detoxing issues also. Can disabling vertigo be coming from this?
Posted by Ellen101 (Member # 35432) on :
I tested positive for RMSF as well as mycoplasma. I think you are going to find a good number of people on here have as well.
I have not done IV abx, only orals and IM bicillin. At this point its really too hard to say which symptoms are from lyme and which are from coinfections. I have made good progress overall.
Is your LLMD having you use anything with the IV zith?
Posted by Talktel (Member # 7980) on :
He's taking me OFF the bicillin. I'm alternating Levaquin and then Diflucan weekly for the next month. And I have to start now on IV zith.
This is with a sentive colon.I don't know how I'll tolerate this.
He's also put me on LDN, if I can tolerate that. I had it in the past and had severe nausea from it. And I'm on Samento. And Adrenal suppplements for cortisol
I'm off the babs meds for now also.
I am real nervous about what I've just read online about Rocky Mountain Spotted Fever.
People die from this?
Can I get better?
Posted by dbpei (Member # 33574) on :
Talktei, you may have antibodies from RMSF because your immune system already fought it. It is much easier to treat than lyme unless you are in acute distress from it.
I tested positive for it as well. I was treated with doxy and rifampin for 4 months. Levaquin is probably going to be used to treat. As Ellen says, it is hard to distinguish between the symptoms and the illness. I would not worry too much about this.
From my research, this coinfection only needs a few weeks of treatment compared to babs or bart, which are much harder to treat. Good luck to you.
Posted by Talktel (Member # 7980) on :
thank you so much for your encouraging words!
When I read the info about it, I was so worried. You've made me more at ease.
He's treating me with IV Zithromax, and I'm already on Levaquin.
He did take me off babs treatment for now. He thinks my problem are more these two co-infections.
Posted by Hopeny (Member # 35984) on :
Both my kids tested low IGG+ for RMSF. The only treatment for RMSF is Doxy. Not sure if your are IGM positive or IGG, but if IGM (active) personally I would ask for Doxy just to be sure. Like you after doing some reading I was pretty petrifed but was assured that it was for past exposure and not active or they would have been super sick. I also was told it sometimes cross reacts. My 8 y.o. had some severe respitory symptoms when she first got sick that I wonder now if were caused by RMSF but we will never know. She has taken Biaxin for Myco, but I have read Zith works on Myco too. Our immunologist told me if he can't get rid of it he will move to Cipro. You have to see what works on the particular strain that you have. You should also have any relatives that you live with tested, Myco is commonly passed back and forth in families which means you can be in a situation where you are constantly reinfected. Good luck.
Posted by Talktel (Member # 7980) on :
This is an active co-infection. In all the years I've been sick, I was never diagnosed with this one!
I'm not sure if its IGG or IGM positive, but this is the treatment LLMD told me.
I cannot tolerate doxy at all, so maybe that's why he told me IV Zith.
I cannot tolerate oral meds because of colon issue, and doxy was the cause of that issue.
I've been quite sick now for some time, and this is an LLMD who was trained by the best.
I'm not going to read anymore info on RMSF because I don't think its beneficial to know everything. I will just go by what my doc says.
So far, I haven't even found anyone in my area to give me the IV infusions! I've been making calls all day, trying to find someone.
The LLMD office is working on getting agency home care IV infusions for me, but I don't know when that will actually happen, so in the meantime, I'm not even being treated for RMSF.
A PICC line is not an option for me.
Posted by Haley (Member # 22008) on :
I have had high titers in the past for RMSF along with all the other infections.
I think RMSF is probably one of the biggest players in my illness. The most effective med for me was IV Doxy. I've done pretty much every med you can mention. I'm sure many docs don't like to use this as it can be very toxic.
I think it's a good idea to follow your docs advice and if it doesn't work out, move on. I sometimes think we make our illness worse from trying to figure everything out all of the time.
What are your main symptoms?
Posted by Talktel (Member # 7980) on :
What are your sx?
I don't have classic petecheye rash or sharp headaches.
I am very weak, sometimes fevers, and in general I feel ill. I don't know if my cognitive issues are related to this or not, as he feels my Lyme load is lower.
I will go with the LLMD's advice, but I'd like to get onto those infusions already!
I didn't know there were infusions of doxy, but I can imagine that they are toxic.
Posted by Haley (Member # 22008) on :
My worst symptom is SEVERE cognitive disfunction. I don't like to call it brain fog as the term minimizes what I feel. I can't think, I feel drugged or as if I'm floating, I am obviously very slow when conversing. I also have an odd sensation at the crown of my head. sometimes headache, crawling or pressure sensation.
Recently I have lots of fatigue and weakness, but this has not always been a symptom, or not the degree that it is now.
Posted by momlyme (Member # 27775) on :
My son tested positive for RMSF and Mycoplasma pneumonia and Mycoplasma fermentis... also ehrlicia, HHV6, Bart, Babesia, Lyme.
He had very high mercury levels when we tested his hair.
Then, after we chelated metals, we found out we had mold in our house.
He also tested homozygous 4-3-53 - the type that supposedly can't detox at all.
Got out of the mold and within 4 months, he was feeling better, dismissed from LLMD care within 8 months.
For him, mold was holding the immune system down and allowing all these other infections to take hold. Once the immune system was allowed the freedom to clear the body of disease... it did.
Kids are more resilient than adults. Plus, I was sick for over 20 years. It took me 18 months to get well after we got out of the mold. I have had 79 good days in a row. No symptoms at all.
I also tested positive for Lyme, Bart and Myco. Pneumonia... but not RMSF or the others that my son tested for. I only did the Lyme Bart and Myco tests for myself. Tested positive for all of them. I might have had more, who knows.
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