Daffodil
Senior Member
- Messages
- 5,875
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
New test results and worsening symptoms
- Thread starter Daffodil
- Start date
I got up to 4 drops last year but stopped before my Lyme test and never went back on it.
Have you thought about a total herbal only treatment.
I know some people go on this after a few months on oral, most LLMDs all over the world are using different ones now, Byron White/Cowden.
As @Sushi says though take it slowly if you do decide to start on them. re Samento - I could only tolerate 1 drop in one full glass of water at first and that felt hard.
Other people go straight in, think it depends very much on the individual and how sensitive you are.
Dire rear would make a change from my constant constipation, but its not good on a consistent level as you won't be absorbing the nutrients from your food. Have you had a stool test recently?
oh I forgot to add, a lot of people are testing positive for Marcons as well, now it seem if you have this you should treat it before Lyme, do you have any problems with your sinuses? But there again a friend hadn't but tested positive for this.
Mouth and nasal biofilms are all part of the bigger picture. I'm going to get a sample done soon.
I have some links for treatment products if you think it may be part of your problems.
Have you thought about a total herbal only treatment.
I know some people go on this after a few months on oral, most LLMDs all over the world are using different ones now, Byron White/Cowden.
As @Sushi says though take it slowly if you do decide to start on them. re Samento - I could only tolerate 1 drop in one full glass of water at first and that felt hard.
Other people go straight in, think it depends very much on the individual and how sensitive you are.
Dire rear would make a change from my constant constipation, but its not good on a consistent level as you won't be absorbing the nutrients from your food. Have you had a stool test recently?
oh I forgot to add, a lot of people are testing positive for Marcons as well, now it seem if you have this you should treat it before Lyme, do you have any problems with your sinuses? But there again a friend hadn't but tested positive for this.
Mouth and nasal biofilms are all part of the bigger picture. I'm going to get a sample done soon.
I have some links for treatment products if you think it may be part of your problems.
Last edited:
Hi Daff, so sorry for your problems, I know you have had a really hard time. I think you need to have a talk with KDM and ask him what to do - is he changing the antibiotics frequently enough? are you taking Bio Film busters?
I know in the Under the Skin documentary a guy on there talks about not feeling better until he had been on abx for about 3-4 years (I think).
Have you been tested for molds or other issues - KDM is getting more into this now I think. It seems that for some of us it is not as simple as treat the Lyme etc and get better.
I believe some of us have misdiagnosed Lyme, but some have M.E which causes immune disarray which makes infections and viruses harder to clear. I think for those in that situation clearing the infections wont be a cure but should lead to improvements.
Sending hugs your way Daff
I know in the Under the Skin documentary a guy on there talks about not feeling better until he had been on abx for about 3-4 years (I think).
Have you been tested for molds or other issues - KDM is getting more into this now I think. It seems that for some of us it is not as simple as treat the Lyme etc and get better.
I believe some of us have misdiagnosed Lyme, but some have M.E which causes immune disarray which makes infections and viruses harder to clear. I think for those in that situation clearing the infections wont be a cure but should lead to improvements.
Sending hugs your way Daff
soxfan
Senior Member
- Messages
- 995
- Location
- North Carolina
I still DO have the fatigue...it is probably the most debilitating part of whatever I still have. I had to stop working not because I was too tired but when I came home my brain and body were so overstimulated I couldn't relax. It would last until the next day when I would do it all over again.
No...no more IV for me. I did a second round a year later and it did nothing. The doctors weren't surprised as they told me usually Rocephin is a one time thing.
I probably just either have permanent damage from whatever attacked me or I have CFS from the Lyme/Bartonella infection....
No...no more IV for me. I did a second round a year later and it did nothing. The doctors weren't surprised as they told me usually Rocephin is a one time thing.
I probably just either have permanent damage from whatever attacked me or I have CFS from the Lyme/Bartonella infection....
Daffodil
Senior Member
- Messages
- 5,875
soxfan.....but are you still on antibiotics or any maintenance treatments llike herbals? i think you have to keep taking something....?
Daffodil
Senior Member
- Messages
- 5,875
@maryb ....I read a little about marcons and am going to ask my doc about this. I have the feeling that my nose is 1/2 blocked...sinus kind of inflamed, for a long long time. an ENT doc did once say that it looks a little inflamed and I tried a netti pot for a while but it didn't do anything. an elite ENT doc in manhattan said it appeared that the issue is stemming from trigger points in the back of my neck, which makes total sense to me.
@AkeBono.. I do have SIBO. my doc wanted me to take butyrate at first and it made me REAAAALY sick very quickly...but I don't feel like the glutamine is really hurting me. ..but who knows.
I think I have to finish 6 months of this immunoglobulin subQ before I think of adding samento. there is no way I can squeeze anything more in....but I realize that I should not give up on samento. there are a lot of positive stories out there with that.
@justy.....I think KDM did a mold antibody test once....and I had some tests run many years ago with another doc....there was a slight IgG elevation in some mold thing on KDM's tests ....but I don't think enough to do anything about it.
thanks everyone, for your input
xoxo
@AkeBono.. I do have SIBO. my doc wanted me to take butyrate at first and it made me REAAAALY sick very quickly...but I don't feel like the glutamine is really hurting me. ..but who knows.
I think I have to finish 6 months of this immunoglobulin subQ before I think of adding samento. there is no way I can squeeze anything more in....but I realize that I should not give up on samento. there are a lot of positive stories out there with that.
@justy.....I think KDM did a mold antibody test once....and I had some tests run many years ago with another doc....there was a slight IgG elevation in some mold thing on KDM's tests ....but I don't think enough to do anything about it.
thanks everyone, for your input
xoxo
soxfan
Senior Member
- Messages
- 995
- Location
- North Carolina
@Daffodil- I am currently on Rifampin/Levaquin because I kept breaking out in a Bart rash on my back. I think when we decide that I have been on them long enough I will go to herbals.
I have taken herbals in the past (6 years) ago for at least a year but I still relapsed....This all could be from my 2nd tick bite though.
I have taken herbals in the past (6 years) ago for at least a year but I still relapsed....This all could be from my 2nd tick bite though.
Charles555nc
Senior Member
- Messages
- 572
levaquin, septra, cipro are on my "allergic" list because they are terrible for your body long term.
Hi @Daffodil
what about your Borrelia and co-infections results? and CD57? if the latter are low relapses are likely, if you check Burrascano's guidelines there's some helpful info about the topic
I don't have an answer but for best chances of success you need to treat all forms of Borrelia incl. intracellular and cystic. Biofilm formation can also be an issue and so low peripheral circulation. In addition I'd also try and find out what is holding back your gut health.
One thing we can't afford with this illness is relying on our thoughts and feelings. As far as I'm concerned it always paid proceeding in a systematic way on the basis of test results and drs advice often against my convinctions.
Best wishes.
Daffodil
Senior Member
- Messages
- 5,875
@xrunner...wow. thank you for your insights. my fog is so bad, it is so easy to get carried away with negative thinking and not thinking logically..it happens so much to me now.
in march of 2013, my CD57 was 48 (normal: 60 - 360) and now it is 105. they were both done at Redlabs so i think i can compare them. perhaps this up and down in inflammation and clinical status is par for the course.?
i dont know if my doc is targeting biofilm or cystic. i can ask him. my tests show borrelia and probabey bartonella but that's it.
Daff
in march of 2013, my CD57 was 48 (normal: 60 - 360) and now it is 105. they were both done at Redlabs so i think i can compare them. perhaps this up and down in inflammation and clinical status is par for the course.?
i dont know if my doc is targeting biofilm or cystic. i can ask him. my tests show borrelia and probabey bartonella but that's it.
Daff
Gingergrrl
Senior Member
- Messages
- 16,171
Yes, it is extremely dangerous and no one should take it long term. The damage is cumulative and the longer you take it, the worse the potential damage can be.
@Daffodil, You meant that tests for Borrelia and Bart were still positive when you retested after two years?
That's an improvement then!
soxfan
Senior Member
- Messages
- 995
- Location
- North Carolina
@Daffodil- I was bit again in June 2012 so that is what I am in treatment now for. I was treated for Lyme then and only Lyme but apparently I also was infected with Bartonella as the rashes on my back are Bartonella rashes. I have many photos of them and they look exactly like cat scratches....
@Gingergrrl- I have only been on Levaquin for a month so I am not worried about any long term effects. I have been sick so long I don't worry about stuff like that anymore. I am more concerned about feeling better and living a somewhat good quality of life....I am not going to go into my history but I have been through more than I care to write about in terms of treatments....I trust my doctor as I have been seeing him for over 9 years. He helped me get well the first time and I expect it again.
@Gingergrrl- I have only been on Levaquin for a month so I am not worried about any long term effects. I have been sick so long I don't worry about stuff like that anymore. I am more concerned about feeling better and living a somewhat good quality of life....I am not going to go into my history but I have been through more than I care to write about in terms of treatments....I trust my doctor as I have been seeing him for over 9 years. He helped me get well the first time and I expect it again.
Gingergrrl
Senior Member
- Messages
- 16,171
@soxfan I understand and don't mean to sound bossy or imply anything bad re: your doctor. Everything is a trade off and I remember from your other posts how long and how much you have suffered and would never minimize that. In my case, I was not warned about Levaquin and after only seven pills, I had a systemic neurotoxic reaction and it nearly tore the tendon in my right arm and I am right handed (and my arm was in perfect condition prior to Levaquin.) It is one of the things I most regret from my entire life if I could have a do-over. I promised myself I would warn other people who may not know b/c I myself did not know and was not given informed consent to choose.