where to go next

I posted here maybe a few weeks ago. I have been sick for several years but just last year received a lyme diagnosis for positive lyme, bartonella, RMSF. However this year I have tried IV ozone/ colloidal silver, some herbals, and about 3-4 months of bactrim, doxy, rifampin, MB, oil oregano. Much to my surprise these treatments had 0 effect. Really did not feel any better or any worse. My LLMD said after several months I should at least feel some effect, a small herx followed by small improvements. So she recommended stopping everything for a few weeks and seeing if I notice any changes. If so maybe try pulsing.

I have done a lot of mold treatment and 95% sure my living environment is great. If I go in mold I crash hard but I am stable where I am . I have tried probably hundreds of supplements, almost all of them do not effect me or have a slightly negative effect. My doctor recommended consulting with another MD I have worked with in the past, and says we can consider IV abx, dapsone/disulfiram, or a parasite med trial. I was very convinced bartonella was my main problem but now my doctor is not sure due to lack of response, herx, etc. Someone mentioned I watch the bartonella babe video with the kid named Jack, but even he had some noticeable effect from taking bartonella drugs.

It feels like my options are dwindling, I have tried almost every supplement under the sun. I am going to give DNRS a shot soon but not sure that will be my life saver. I know my autonomic nervous system is completely messed up/ my body is shut down. Inability to gain any weight, gut issues, brain on fire, no morning erections/ ejaculation issues. Starting to get a little scary when you finally have some hope that treatments will work and they don't do anything. Maybe someone else with a similar response to lyme treatments can offer their thoughts? Would really be great to talk with someone one on one who has experienced similarities in their journey. Thank you

That’s a tough one lyme guy. I do react to Lyme abx, but the gains don’t stay. Did you try herbal methods of treating it? Others here are more knowledgeable about that than me. I suppose if your histamine is high you could try seeing a mcas doc that might consider giving you ivig or something horrifying like gleevic…. I’m not too knowledgeable about the stuff mcas docs beyond standard antihistamines and mast cell stabilizers and the regular natural supplements.

How was you positive diagnosis for Lyme arrived at?
Diagnostic testing of some type (Western Blot, etc.)?
Strictly Clinical via a LLD ?

Rob

Bailey:
yes I read a blog of someone who saw Dr. Afrin for MCAS and nothing worked for her except gleevec. Very interesting.

Faith:
I have had the OAT, mycotoxin, GI Map, and parasite stool testing. None of them came out terrible actually. The GI map showed some dysbiosis, high calprotectin, and a few other things. I honestly can't recall exactly what they mean from looking at them again, but I did go over them with representatives from the companies that run the OATS/ GI map tests and they were like "it's really not that bad". They recommended a few supplements, probiotics, etc. and my doctors have looked at these but I guess nothing really stood out. Mold test results came out close to 0 but did not take glutathione as some say you should beforehand. Nystain I am taking now, only antifungal I have taken. I have done Xclear nasal spray. Stool test showed high blastocystis homonis. Dr. said bactrim should take care of this but didn't help symptoms.But yes my gut definitely seems to be an issue still, and doxycyline actually seemed to make my gut feel slightly better. I also have like severe welts or raised inflamed bumps around my anus that give me pain when pooping/wiping, and often get very itchy (not only at night but throughout the day every few hours). I got this checked out but noone really knows what its from. I did do hydrocortisone cream on my anus for a few days and it completely went away and felt amazing to not have this. But as soon as I stopped the cream it came back.
Actually the first week on rifampin my bowel movement were the best theyve been, but then after a week or so it went back to sort of loose, painful stools.

Dental work- no root canals, no fillings, I did have my wisdom teeth taken out but this was about 3 years before onset of illness.

Rob:
I had igenix testing done- it was both CDC positive and igenix positive. The Dr. who ordered said it was the most positive test theyve seen in a while.

Garzie:
Interesting. It can definitely be a little frustrating to not see progress, guess it often takes time. My doctor did say most of her patients would have had some response by now.
I generally eat a paleo, high fat, moderate protein, lots of veggies, maybe 2 fruits a day. I'm not sure if my carb intake is low enough where it is considered keto. I don't really eat sweet potatoes, rice, other high carb foods, but I do have veggies, fruits, some cassava tortillas, etc. So maybe I should try to be more strict about being 100 percent keto.

Take a look at this about high calprotectin.
https://www.planetnaturopath.com/digestion/reduce-calprotectin-naturally/

Did the doctors do enough testing to rule out IBD, ulcerative colitis, and Chron’s disease?

Have you had a CD57 Test done recently?
It can be a great indicator of how effective your current Lyme treatment is.

Also,
Treatment of Lyme is very much an individual process.
What works for one, may not work at all for another.
For me:
Doxycycline - No effect
Oil of Oregano - No effect, except for making me smell like a pizzeria!!
Cat's Claw - Maybe a small effect, but nothing major
Japanese Knotweed/Resveratrol - 1st treatment to affect/amplify symptoms
Cryptolepis - affecting/amplifying symptoms

Rob

Rob. I did have CD57 test - it was pretty normal in range. But yes I agree its very individual.

Thanks a lot Faith. I'm gonna follow up with my doctors about this.

WalkingbyFaith said...
IBS is different. It has symptoms but no inflammatory markers. IBD, ulcerative colitis, and Chron’s disease have inflammatory markers and are classified as inflammatory autoimmune disorders. I would try to have a gastro do all the appropriate work including colonoscopy and possibly biopsy to confirm or rule out any autoimmune disease.

there are inflammation markers in IBS - its just that if they are below a certain threshold they generally use that to rule out IBD (a group term for Chron's or UC) - these levels are still several times above the normal levels though - so significant.
i know because that's wat i have had on various stool tests. i think its lactoferrin and calprotectin and secretory IgA.

my OAT and GI-MAP tests came out the same - mild to moderate dysbiosis - inflmammatory markers - no obvious pathogens - yet i was severely ill.

my guess would be bart as the driving factor - causes colitis - and slow to react to typical antibiotics - can cause big herx with herbs though

garzie- i have also heard bartonella can drive colitis. But when going after bart doesn't do much, can these autoimmune conditions like crohns, IBD, colitis, etc be independent ? maybe something like IVIG would help? idk