I have MCS, and I have read many others do with lyme as well. I think Babesia is playing a role as well,
I have heard others have MCS that do not have lyme, have any others heard this?
I had Lyme/babesia about 10 years untreated then developed MCS, and then got treatment 7 years later, so I had Lyme/Babesia untreated 17 years.
I have MCS affect my breathing, but it also affects my brain, and it also makes me sometimes so sick, such as now, after being around Turpentine, which someone in this household used to clean their motorbike, and then I could smell it on them, I was soooo sick,
so insane almost from breathing it in,
why? does this happen, does anyone know the real answer?
Is is because of Lyme/affecting the brain or the actual nose?
I also know it is from Babesia, so it is still affecting the brain? I now also the lungs.
It is such a horror living with this, I hope one day it is gone completely,
Why do some with long term Lyme/Babesia not have MCS and others do? I have EMF too, and others dont, could it be a different strain of LYME?
I know for myself my light sensitivity and EMF was/is from Babesia,
Trish
Posted by Pinelady (Member # 18524) on :
I think it is a combination of Lyme toxins, cell dysfunction, and nerve inflammation. Probably a
whole lot more involved too. Mine has gotten a lot better in treatment including the sudden severe
allergies. That caused asthma attacks. Hopefully yours will too.
Posted by Pinelady (Member # 18524) on :
I think it is a combination of Lyme toxins, cell dysfunction, and nerve inflammation. Probably a
whole lot more involved too. Mine has gotten a lot better in treatment including the sudden severe
allergies. That caused asthma attacks. Hopefully yours will too.
Posted by Myco (Member # 9536) on :
Infection in the liver leaves us unable to filter toxins. When I treated my lyme my MCS went away and stayed away.
I always feel badly for all of these "CFS" patients who talk about terrible MCS. I have tried to convince many of them to treat the infections but now realize it is impossible to change their minds.
I was once diagnosed with CFS by a very famous CFS Dr. Guess he was wrong.
Posted by sk8ter (Member # 8671) on :
Please get to a doc that does methylation pathways testing. This is the reason why we are different. That and KPU testing. We are genetically different and until our pathways are opened up we will continue to get reactions. Look into Vitamin Diagnostics tests but call them first as they have moved and have been behind in their testing.
Posted by Robin123 (Member # 9197) on :
Hi - yes, there are lots of people with MCS who do not have Lyme. They can have toxin overload from many sources, plus have genetic difficulty detoxing. There are a lot of MCS chatsites.
Many of us have a difficult time detoxing genetically. What that means is we've gotten genes from our parents for liver detox pathways. If they are problem genes, we don't detox well.
There's a bloodtest we can take, the liver detoxigenomic test through Genova Diagnostics lab in NC. It shows the genes we received from each parent for the eight enzyme pathways in phase I of liver detox, and for four out of ten drains in phase II.
Phase I is like the bathtub fills up with water, and phase two is like how it drains or not.
Weak genes mean we fill up too fast and too much, and we don't drain sufficiently.
No bad gene - we handle that pathway ok. One bad one, still ok. It's the pathways where we have two weak genes that makes us weak in that pathway.
My LLMD who did the test with me said most MCS people have weak genes for the first two enzyme pathways in phase I, meaning we metabolize too quickly, respond too quickly to chemicals. And sure enough, there they were on my test.
Once you have your genetic profile, it can help a knowledgeable doctor figure out how to treat your pathways with supplements. Tht's what we're doing with me, altho it's slow-go here in terms of finding stuff I can handle.
I recall when I first started on antibiotics for Lyme, my chemical sensitivity did go down, such that I was able to stand next to a smoker for the first time without running. Now, that's not a great goal to have, mind you, but I was excited that something had changed.
Can't say that that's the case anymore. I am really sensitive now, even tho I've been taking abx for a while.
My opinion: that I simply find out what I respond best to for treatment.
So far, for example, antioxidant anti-inflammatories are working to reduce symptoms - mangosteen juice, noni juice, grapeseed extract. Also the PEMF magnet machine was amazing - pain down, energy up, etc.
So we're going to try to treat the missing pathways in me.
Posted by massman (Member # 18116) on :
Liver liver liver. Amen.
Posted by ericaf (Member # 10929) on :
Try the Pekana homeopathic detox and drainage kit. I have MCS and intolerance to most drugs and after 2 years of trying so many things and seeing doctors this is what worked and is making me improve. It helps balance the 2 phases of detoxification and helps regulate the immune system. If you do try it start slow with only a few drops.
Posted by Robin123 (Member # 9197) on :
I took a look at the Pekana products and read that there's alcohol in them. I know I don't handle alcohol. I guess you do, Erica?
Posted by f13girl (Member # 23844) on :
Curious if those of you with MCS can handle abx/lyme treatment? I seem to crash from an intense herbal regiment (for 5 months) and now from pharmecuticals. I don't call it a herx since i go from functional to MAJOR/lasting neurological symptoms (MS-neuro like) to the point of not functioning/not sleeping and being terrified. Does anyone else have this experience. I am the 3rd month now of my pharmecutical crash and have to take a LOA(from my work at home job!!! it is so bad and scary). I'm being tested now for the liver detox/genova (at my request of my LLMD) and wonder if I should be tested for methylation as well. My history was FIRST MCS, then Fibromyalgia, then optic neuritis/neuro started 3 years ago. At this point I am deathly afraid of any lyme treatment since they make me so much more worse with lasting frightening symptoms.
Posted by Pinelady (Member # 18524) on :
That herxing is common in Lyme treatment. It is
something most go through. It is not fun, can make
you very sick, and can require support if not
conducted properly. Hence we have LLMD's to help
with those issues. I have gotten a lot better
pain wise, to the point I don't know how I ever
tolerated what I did. But I did, and I keep
moving forward.
Posted by ericaf (Member # 10929) on :
I tolerate the pekana drops if I put them in a loarge cup of water. I usually don't do well with alcohol either but by increasing the amount of water I do ok.
Posted by LittleLymie19 (Member # 15610) on :
f13girl, I can completely relate. I can't tolerate lyme treatment. I'm usually in the ER fearing that I'm going to die on day 2 of it. My neurological symptoms go insane, just like you described, to the point where it affects other organs like my heart, breathing, etc.
Anyone else have MCS so bad that they can't leave the house, or have anyone over to their house? I always hear of people getting headaches due to MCS or breathing issues...but I don't hear of a lot of other people with the neurological involvement like I have (and like f13girl described). It literally starts to shut down systems in my body, to the point where I can't stand up anymore and feel like I'm about to lose consciousness.
I have to second the recommendation for pekana products. They help me a little bit too, and I'm also the type that can't handle anything. I can't handle the alcohol in them, so I burn it off (boil water, put your drops in a glass, then pour the boiling water over them into the glass). Maybe you could ask your doctor about which ones would be best for you, since our bodies all require different things. The great thing about that line is that there's something for almost every ailment.
It's interesting that you think yours is related to babesia. I think mine is related to mold and fungus. I guess everyone is right though, it just depends on what is making your liver and body so toxic.
It's good to hear about this here, because it's an extremely disabling, debilitating, isolating condition.
Posted by AZURE WISH (Member # 804) on :
I agree thta its toxdic overload for me. I think a big contributer to thiis for me is babs.
Still trying to figure out how to detox the babs better... or perhaps what i am really looking for is faster.
For anyone that doesnt know we have a mcs group on lymefriends.
Posted by AZURE WISH (Member # 804) on :
I agree thta its toxdic overload for me. I think a big contributer to thiis for me is babs.
Still trying to figure out how to detox the babs better... or perhaps what i am really looking for is faster.
For anyone that doesnt know we have a mcs group on lymefriends.
Posted by Robin123 (Member # 9197) on :
f13, it's very hard for us to treat, since we're oversensitive. I hardly pass anything. I seem to do best with antioxidant anti-inflammatories. We each have to find what we can do.
The Genova liver detox test includes the methylation pathway test as one of four tested in phase II.
Posted by f13girl (Member # 23844) on :
I stopped the drugs Dec 13 and continued downward spiral of neuro explosion (twiching, jerking, swallowing,total insomnia, speaking, neck jerking, dizzy/ill/pressure feeling, eye pain (i have optic neuritis), weak , shaky, coordination issues etc. I don't see how this could be a herx if it is now going on 2 months since I stopped the medication? I was functional before, now I'm not and feel like I have a major neuro disease where as before I had some minor jerking and twitching, brain fog but was functioning. Now I feel like I have a major neuro diesease... is this a herx or a aI flare? If it's herxing I don' think I'm up to this kind of treatment. Feel like it is causing damage to my nervous system! Would love to hear from others on this topic. I'm trying to focus right now on detox,getting sleeping, and seeif I can recover out of this neuro hell i'm in and then decide next steps for treatment.
Posted by yankeesfan (Member # 23090) on :
Honestly, I think the LLMD's have no idea what they are doing. I think alot of us here try taking drugs and supplements and because we have methylation issues we become even sicker. We are told it is a herx.
I stopped all drugs and supplements. I have now returned to work - before I was bed ridden. I have positive labs for lyme, babesia and erlichia from Igenex and positive smear from Fry. I have never been bitten by a tick.
I was told from here that I had to take drugs to get rid of these bugs and for a year I was so sick. I lost 50 lbs and could not function.
I am still sick - but not like I was when I was trying to treat lyme. For all I know I have it. But what is "it," and what is really causing the problem/s?
If you are reading this and were told you had lyme and are incredibly sick after trying drugs and supplements I would consider focusing on some new theories and treatments. If you want to PM me I can tell you what I have done for the past 4 months and give you an update on how I am doing and still what my issues are.