32 of 40 chronically ill have spirochetes in their blood

[STACEY]

I emailed my very reputable integrative med doc to see if he has any thoughts - he is definitely an out of the box thinker and very smart - he formulates for leading high quality professional supplement companies and lectures around the work as well as seeing a small number of patients. I will let you know if he has any ideas as to why. Yes we need hope and answers and I never stop looking - my husband tells me that I am one of the strongest most committed people he has ever met. Thanks for responding so quickly.

 

[Farmgirl]

I emailed my very reputable integrative med doc to see if he has any thoughts - he is definitely an out of the box thinker and very smart - he formulates for leading high quality professional supplement companies and lectures around the work as well as seeing a small number of patients. I will let you know if he has any ideas as to why. Yes we need hope and answers and I never stop looking - my husband tells me that I am one of the strongest most committed people he has ever met. Thanks for responding so quickly.

@STACEY CHERNOFF Nice to "meet" you! Welcome to the boards. If your husband says that about you, that says a lot cuz he sees your struggle day in day out. How old are you and how long have you struggled with chronic illness, if you don't mind me asking? I am 57 and have been ill since I was 5, but recently got a lot worse. Gotta love those Integrative Doctors! I am grateful for mine. The best. :-D

Yeah, about replying, well, I don't have a job cuz I can't work, so I like being on the boards when I get a chance. It is a nice medium to communicate with others in similar situations. Best to you! FG

 

[STACEY]

I am 54 and grew up in Chicago (I saw you are from IN - my mom was born in South Bend) but I live in CO now. I think I have always had weird health stuff but I am pretty damn strong and powered through a lot until we moved to CA and I went down badly in 2012. Mold toxicity - which lead to all of the other illness\diagnosis when I could not recover. After a PCR lyme test from DNA Connexions I found out I have 2 kinds of borellia, babesia and erlichia along with a whole host of high viral titers which have lead me to discover I had CVID and now neuropathy and CIDP . I think I was either born with the lyme or had it since childhood - explains a lot of weird sick stuff as a kid. I had a boatload of lyme treatments (everything to daily blood ozone to IV abx) for 4 months at Envita in AZ and it helped to a point maybe. We moved back to CO because I just feel way better here and a LOT less mold. I actually feel better at altitude - way better - and the dry climate.

So SO sorry you are struggling too - it really sucks and it's such a damn roller coaster of treatments, symptoms and emotions. Thank goodness my husband and I have our own company or I absolutely could not hold a job. I do what I can when I can - it helps me to stay sane.

I get a huge dose of IVIG 2x every 3 weeks which has helped somewhat - but it's no cure, and I take a plethora of supplements, hormones and a few drugs that have helped somewhat like valtex and naltrexon. Vitamin C infusions make me herx everytime but seem to help - and regular cleansing too. Diet does not seem to matter a whole lot with my symptoms. I am on levaquin right now for sinus and I feel so much better but am dreading going off of it - just dreading.

I am (cautiously) optimistic about the Cortene trial - here is what my doc had to say when I emailed him:

Thanks for telling me about the Cortene trial. I asked my friends at Open Medicine lnstitute http://www.openmedicineinstitute.org/the-clinic.html, a research oriented clinic in the SF area that specializes in chronic fatigue and complex illness (one of their docs, Andy Kogelnik is featured on HealthRising) and they seemed to believe that it is legit. It’s an interesting hypothesis, but hard to say at this point whether the drug will make an impact. Unfortunately, it appears that you would be excluded from the trial because of your current meds:https://clinicaltrials.gov/ct2/show/NCT03613129. Wish I could be more encouraging, but I guess we’ll have to wait and see whether the drug proves effective in other people.

All we can do is share experience strength (when we have it and hope. Interested in knowing what has\is working (and not working) for you. As my husband says everyday - don't judge it - just do the best you can from where you are. Take good care.

 

[Farmgirl]

I am 54 and grew up in Chicago (I saw you are from IN - my mom was born in South Bend) but I live in CO now. I think I have always had weird health stuff but I am pretty damn strong and powered through a lot until we moved to CA and I went down badly in 2012. Mold toxicity - which lead to all of the other illness\diagnosis when I could not recover. After a PCR lyme test from DNA Connexions I found out I have 2 kinds of borellia, babesia and erlichia along with a whole host of high viral titers which have lead me to discover I had CVID and now neuropathy and CIDP . I think I was either born with the lyme or had it since childhood - explains a lot of weird sick stuff as a kid. I had a boatload of lyme treatments (everything to daily blood ozone to IV abx) for 4 months at Envita in AZ and it helped to a point maybe. We moved back to CO because I just feel way better here and a LOT less mold. I actually feel better at altitude - way better - and the dry climate.

So SO sorry you are struggling too - it really sucks and it's such a damn roller coaster of treatments, symptoms and emotions. Thank goodness my husband and I have our own company or I absolutely could not hold a job. I do what I can when I can - it helps me to stay sane.

I get a huge dose of IVIG 2x every 3 weeks which has helped somewhat - but it's no cure, and I take a plethora of supplements, hormones and a few drugs that have helped somewhat like valtex and naltrexon. Vitamin C infusions make me herx everytime but seem to help - and regular cleansing too. Diet does not seem to matter a whole lot with my symptoms. I am on levaquin right now for sinus and I feel so much better but am dreading going off of it - just dreading.

I am (cautiously) optimistic about the Cortene trial - here is what my doc had to say when I emailed him:

Thanks for telling me about the Cortene trial. I asked my friends at Open Medicine lnstitute http://www.openmedicineinstitute.org/the-clinic.html, a research oriented clinic in the SF area that specializes in chronic fatigue and complex illness (one of their docs, Andy Kogelnik is featured on HealthRising) and they seemed to believe that it is legit. It’s an interesting hypothesis, but hard to say at this point whether the drug will make an impact. Unfortunately, it appears that you would be excluded from the trial because of your current meds:https://clinicaltrials.gov/ct2/show/NCT03613129. Wish I could be more encouraging, but I guess we’ll have to wait and see whether the drug proves effective in other people.

All we can do is share experience strength (when we have it and hope. Interested in knowing what has\is working (and not working) for you. As my husband says everyday - don't judge it - just do the best you can from where you are. Take good care.

@STACEY, sorry it took me so long to reply! I forget where the thread was that we were "talking" on and it took me a while to figure it out. I am "technologically challenged" nothing to do with me, but with my ME. :-D

You are brave and I am glad you had a business like that. We had something like that for years that was involved in. That is a great option for you, as long as you don't overdo it. I like what your husband says. Really really good. He understands as best he can.

Stacey, I have all the same things as you, but I had to look up the acronyms you used and I hate to say, I looked them up and now I can't remember what they were, but something having to do with a broken immune system.

I have got to run cuz I am working up to a ton of pain and I am going to crash if I don't lie down and stop processing.
I would love to talk to you some more.....maybe I will send you a PM...hope I don't forget again.

We moved my son to Tennessee last weekend. I stayed in the back of the cab of the truck lying down the whole time except for bathroom breaks and doggie needs. It wiped me out and I am still in a bad place. Long story, but I am still glad I went and I have learned how to not be a burden or to let myself get in a bad place...just rest. Traveling is almost impossible, but my husband is obliging and we have a system of setting up a bed in the car or whatever so I can be flat....

I wil try to respond more later. I hope you are having as a good of a day as you can, Stacey. :-D
Farmgirl