Thanks for your reply Garzie. Yes, I am sure I have Bartonella as well. I have a large indent in my forearm (loss of subcutaneous fat), lumps under the skin in my thighs that are sore when I press on...
Cakegirl, I have a very similar story to your moms. I had surgery on my foot and took Tylenol with codeine...had severe stomach pain and I think it tore my stomach up. After the surgery my symptoms...
Morningstars....A leading Mast Cell Activation Syndrome expert Dr. Afrin shares his experience with patients who use Medical Cannabis to help with their mast cell disease symptoms in his book Never...
I also have reactions to anything to do with the immune system and haven't been able to detox mold or treat Lyme. I am now taking Nalcrom (Canadian version of Sodium cromolyn) and ketotifen. Both of...
I am the same as you. I have severe reactions to anything that has to do with the immune system. Best wishes to you. Keep us posted please. I am very reluctant to get the vaccine until I can get...
When I herx that is my first symptom. I feel the tightness in my chest when I get out of bed in the morning. It's a very uncomfortable feeling! My dr thought I had developed a heart murmur and had me...
I had this symptom. When I herx my chest muscles all tighten up. The osteopath I see said that they were so tight that they had actually moved my heart slightly. He worked on it and I no longer have...
Thanks for the reply Sunny40. Will be sure to start with a tiny dose whenever my prescription is filled....
Sunny40, I can't tolerate anything that kills bacteria or boosts the immune system. Does it help with being able to tolerate supplements/herbals?...
Cakegirl, I realize this is an older post, but I am also dealing with MCAD and wondered how your daughter is doing now. Do you think the SBI protect really turned things around for your daughter or...
Walking by Faith, I am the same. I actually think mast cell is worse than Lyme. I have bone spurs everywhere which is my reaction to all the inflammation I get when I try to treat. I also have mold...
Thanks for the update. Hope you continue to see improvement....
Best wishes for no further reactions Saraeli. Please keep us posted....
I herx from Quercetin. It's antibacterial. I have mast cell and flare from anything that kills bacteria, or boosts the immune system. One of my symptoms when I herx is tight chest muscles....
Very interested in this too. Since I react to anything that has to do with the immune system I am reluctant to get a vaccine. I flare from vit c, vit d, magnesium so it is a tough call....
Cherylfelice, wondering how you are doing. Hope things have settled for you. Please give us an update....
I also have MCAD and can't tolerate anything that kills bacteria, disrupts biofilm or boosts the immune system. Whenever I take anything to treat, one of my symptoms is chest pressure....yes, like an...
Disillusioned404, I have been unable to treat Lyme due to horrific MCAD flares, and use cannabutter (cannabis infused coconut oil) to help with symptoms. I only take 1/4 tsp before bed since I use...
Yes, lipoatrophy is probably what is going on with me too. I don't have the build up of fat in other areas. I have an indent in my arm which I originally thought was muscle atrophy, but I don't have...
I am also experiencing loss of subcutaneous fat in my hands and right forearm. I had a pinching like feeling in May in my right forearm and then an indent in my skin. It is itchy/tingly and if I use...
I have MCAD without food allergies. I react to anything that kills bacteria, boosts the immune system, or disrupts biofilm. I am unable to treat Lyme and rely on cannabutter (cannabis infused coconut...
I have passed lots of rope worms after enemas. They have been tested and found not to be parasitic. This is an interview with Alex Volinsky and enemas he used to expel them....
Totally agree with you borrelioburgdorferii. No quality of life without it....
Borrelioburgdorferii, I have tried stopping it a couple of times and I was miserable. All of my Lyme symptoms came back. I'm like you....never want to go without it. I only use 1/4 tsp before bed so...
I use ketotifen and cannabutter (cannabis infused coconut oil). Cannabutter has been a godsend for me. This is a quote from Dr Afrin: A leading Mast Cell Activation Syndrome expert Dr. Afrin shares...
SicklySkald, did you ever find something to help you with the MCAD flare when trying to treat? The flare just keeps building and building with me until I stop the treatment....
Bluelyme what were the symptoms of the wasting syndrome, and vasculitis? A couple of drs thought my arm looked like muscle atrophy. I have an indent in my forearm with aching, itching, but no loss of...
Does anyone else have vein furrowing or indenting? I have this in my arm....indented and large blue veins coming to the surface and it's itchy. I've read it can be caused by Lyme....
I realize this is an old post but I am also having vein furrowing and veins coming to the surface in my arms. Did you find out how to treat this? Any info is appreciated....
Bikernut, can you give us an update on the SOT treatment you and your son had. Since I can't tolerate antiboitics or herbals, I am very interested in hearing about this....
I received this site link in an email from the Biologix Center. Has anyone heard of using phages to treat Lyme? It says with minimal Herxheimer flares. Since I am unable to treat due to horrific MCAD...
IHL, did you find out any more about the growths on your bones? I am also dealing with this and would love to know if you got any help for this....
I think his treatment would depend on test results. He is very expensive to see and have testing done. He uses imatinib with some patients. Another thing that has helped people with MCAD is DRNS. The...
I also feel I have MCAD triggered by Lyme and mold toxins. Ketotifen has helped with insomnia, stopped the weight loss, and fatigue. Cannabutter (made from cannabis infused coconut oil) has given me...
I have MCAD and have been unable to treat Lyme due to horrific flares from most herbals, abx and supplements. Cannabis is a strong mast cell stablilizer so I make cannabutter (cannabis infused...
Thanks astroman. Is Arnica a homeopathic remedy or a roll on? Have no experience with it. I have used voltaren...same idea?...
Thanks for the replies. Running wild, I had no shoulder injuries or problems with my shoulders before Lyme. I have calcium deposits in both shoulders. I get so full of inflammation when I herx that I...
My first symptom when I got Lyme was shoulder pain and an MRI shows calcium deposits. They have been there since I got infected over 6 years ago and I feel them hitting tendons when I move my arm in...
I have been on ketotifen for several years. It helped with sleep (could only sleep 2-3 hours a night ), it stopped the weight loss, ended the fatigue, helped with depression. I only take 1mg at...
I reacted to LDN right away. CIRS can trigger MCAD as well. I also have mold toxicity. The allergist I went to doesn't think I have MCAD because I don't have rashes or diarrhea. I think most drs...
Lyme triggered MCAD with me ( mast cell activation disorder) which is why I reacted to it. Could you have MCAD? I muscle test positive for things and then react to them....
I have MCAD triggered by Lyme. I have flares with anything that boosts the immune system, kills bacteria, or disrupts biofilm. ( I want to thank Traveler for suggesting I look into MCAD.) I react to...
Lyme triggered MCAD (mast cell activation disorder) with me. One of my reactions to most supplements, herbals and abx is chest tightness. For me, I think it's mast cells degranulating. Mast cells...
I could not tolerate 0.5mg of LDN. It caused back pain and I also developed a fungal growth in my belly button. Both were symptoms I had not experienced before....
It stopped the weight loss but now I keep putting weight on. My allergist told me she hasn't prescribed it in years due to the weight gain....
I take ketotifen for MCAD triggered by Lyme. I only take 1mg before bed which has helped with insomnia, depression, weight loss, and fatigue. I was only sleeping about 2-3 hours without it. Now I...
Wow, thanks for the info. Will look into this. There is a chiro in my area who does Active Release. I tried it a couple of years ago -it doesn't take long.... 15 min but a death in the family side...
My tendons feel like cords as well. Interested in responses to this post. As soon as I got infected with Lyme I developed tight muscles everywhere and they have never relaxed. The osteopath who I saw...
Astroman, when you mentioned that, " your neck made crunching noises and felt "gravely" with every move for a few years", that is exactly what my neck sounds like. You said that you used, "tendon and...
I had a similar thing that happened to me for years. I would wake up with a heart rate of around 130 (resting heart rate is mid to low 60's), and sweats after 2-3 hours of sleep. Then I would be wide...