I have been extremely stressed over two things occurring at once that would send a normal person over the edge. I have also had no luck getting help from doctors and this scares me.
I started Augmentin and that is when it started. It began with mania. I was loopy, writing a lot and very amused with everything. But I was becoming more and more breathless and insomnia was getting worse.
I did a 3 day course of DMSA to detox and that is when things crashed. The third night I did not sleep at all. The worst day I was flying into near rages. Then I started to watch a movie "to unwind" and it had a very sad beginning. I could not stop crying for half an hour after I shut the movie off.
I thought it was the DMSA so just waited for things to quiet down. Then I did a search and found out augmentin can cause this type of reaction so I quit it. The insomnia continued but not as bad. So I quit the malarone too.
Out of breath. Tension. Exhaustion. Lower legs ache sometimes. Emotionally volatile. Brain feels numb. Hard to focus and remember. Panic.
So what is it? I am doing everything I can. It is overwhelming me. Do I have a new infection - maybe the fry bug? My blood work shows a blood infections (parasite). It also shows I still have active borellia.
I am much quieter and calmer off the drugs.
Posted by glm1111 (Member # 16556) on :
I know you tried pharma antiparasitics, but you might want to consider trying some antiparasitc herbs and salt/c. Usually if there are parasites showing in the blood, they are also in the G.I. track.
Sometimes it can take a while and persisitent tx until they let go. Worth a try especially if you're around animals. Sorry you are having such a rough time.
Gael
Posted by nefferdun (Member # 20157) on :
Thanks Gael,
The IgG3 was 121 and normal is 18 to 106. It can be caused by blood parasites. That is what babesia and the fry bug are. It is also known to be high with chronic fatigue but CF is often caused by babesia and the Fry bug.
I don't think I should try salt with hypercoagulation and high iron and my age.
Posted by Carol in PA (Member # 5338) on :
What are you doing with nutrition? Restoring nutritional deficits may improve some of the symptoms.
Your legs aching...are you taking a good B vitamin? A B12 sublingual may help too.
Out of breath...low oxygen, inadequate red blood cells. Babesia can cause this, as babs causes the red cells to break apart.
Your long bones make more red cells, but you need good nutrition to support the process.
Magnesium and trace minerals...low magnesium can cause tension and panic. It sounds like your hormones are out of whack, others may be able to advise about adrenal support.
Just offering a feel better. Everything into consideration, adrenals, hormones, Lyme/ cos, Meds, whereis the answer? God bless.
Posted by lpkayak (Member # 5230) on :
thru tx i have experienced much of what you have
i didnt analyze it enough ti figure out what caused what
its really good you identified the augmentin...id stay away
i just havent felt i was able to clearly match every sx to a certain bug or co or what ever...i just kept up with tx-slow and steady-didnt do what was really hard or made me crazy
eventually i got out of it
i still have issues but not the acute psyc stuff you mentioned
ihope you are ok soon
Posted by glm1111 (Member # 16556) on :
neff,
Not to be a pain, but I did see a post a few months ago, that Dr. K. said that in order to get rid of babs, you have to treat G.I. parasites.
As far as the salt/c goes (i am not pushing this) but I had very bad hypercoagulation and was 65 when I started salt/c. Vitamin C is a blood thinner.
I also had babs and air hunger. Even if you don't want to do salt/c, antiparasitics seem to be very effective against these pathogens.
I admit I had to do a strong combo for a length of time, but I also had the Filarial Worm co-infection (much to my surprise) and feel that a lot of chronic Lyme sufferers are infected with this co-infection.
Just want to see you get well.
Gael
Posted by nefferdun (Member # 20157) on :
It is so complicated. I am much better after being off the drugs for a couple of days. I think the side effects were getting to me. The Catch 22 is the infections take over without drugs. Herbs do not keep them in check I am in the honeymoon right now. Sleeping better because no chemicals but soon. . . . .
Gael, I think I have decided to get tested for the Fl1953 and the treatment for that is ivermectrin so that will take care of parasites. When I cannot tolerate it, then I will switch to the herbs. I can't take vitamin C because I have very high Ferritin, (stored iron), and C increases the absorption. I use himilayan salt.
Carol, my nutrition is becoming a science beyond anything I ever imagined or can comprehend. With the fry but, plant based diet with low arginine. With the methlation pathways mutations, "nothing with eyes" and low sulfate.
The very things we believe are helping us are hindering us. With the methlation problem, B100 contains folic acid so it makes me much worse. NAC, MSM, Methionine, glucosamine are all bad. I can't even eat the wonder foods like broccoli, brussel sprouts, kale, spinach etc.
With the Fry Bug no nuts, seeds and few beans. It is almost as if I should just give up eating altogether. I am taking an enormous amount of supplements. Boluoke for hypercoagulation, IP 6 to reduce iron, Lactoferrin and trypalia to help with the biofilm. For immune support; goji juice, mangosteen juice, transfer factor, black raspberry, bee pollen/propolis and reishi.
Then there are all the methylation supplements. I just ordered a bunch more of those; everything recommended to get me by until the test results come back, in 10 to 12 weeks. Taking methylfolate has made a big difference. It helps me sleep better except when on drugs. The dark circles under my eyes are lighter.
The psycho stuff is gone. I have better energy, in that I can climb a flight of stairs without feeling like I am going to faint. I am going to the doctor tomorrow and will ask for Heparin, which is actually a no no with methylation (sulfa) problems. If I can tolerate it, I will do a month and then use the enzymes. I will also try to get some phlebotomy done. Maybe with my blood more normal I can have a better chance.
Posted by Dogsandcats (Member # 28544) on :
sounds like you are feeling a bit better and have a plan..
take good care of yourself, your body probably needs rest.
Posted by Maya12 (Member # 36392) on :
Can someone tell me what filarial worms are?
Posted by Maya12 (Member # 36392) on :
Is this the fl1953 ? And how is it treated?
Posted by Maya12 (Member # 36392) on :
Can anyone tell me and nefferdun I hope you get feeling better soon
Posted by lpkayak (Member # 5230) on :
methylation (sulfa) problems: i havent been paying close attention but this caught my eye
i am very allergic to sulfa...does that mean i have another problem you are talking about? a detox problem? or do i need to be tested for something?
thx
Posted by nefferdun (Member # 20157) on :
Ipkayak, It would be a good idea (I believe) for everyone with chronic lyme to get tested for methylation cycle mutations. The fact that you have a problem with sulfa points to the CBS mutation. You can check it out here:
I am feeling better but I can feel Bb getting a grip again. I am going to the doctor today and will ask for mino to try to keep that quiet, and primaquine instead of malarone to see if I can tolerate it. The most important thing I hope he will give me is heparin to thin my blood. I so hope I can get it. Then I will address the high iron later.
I am leaning towards making an appointment with Dr. F. But I would really like to find a doctor that understands how to work around the mutations. I am confused so I don't move forward. At this point, the drugs make me just as sick as the diseases but at least I can take breaks from the drugs.
I am on the vegan low fat diet that Dr. F recommends. I am going to order the kit for his test to be certain I have FL1953. Otherwise it is easy to tell myself the diet is not necessary especially when it is so severely restricted.
Posted by bearlythere (Member # 31973) on :
I was wondering if the DMSA could have caused the symptoms.
I had my methylation study done and it found I couldn't take anything with sulfa. DMSA gave me the same symptoms as you stated.
DMSA is made out of sulfur to chelate mercury.
Posted by TerryK (Member # 8552) on :
I agree with bearlythere - DMSA can be really bad if you have a sulfur issue. I took some for a challenge test and it made me really sick. My doctor said one large dose shouldn't have caused such issues but later I found out that I have the CBS upregulation and it made perfect sense that I would feel very sick with even one dose of DMSA. With extreme caution, I use small doses of lipophos EDTA + microsilica.
If you are going to use something that pulls heavy metals out of tissues and you have a methylation disorder or are on treatment for lyme it would be useful to add a binder such as microsilica but more important even still is to find a doctor who knows how to guide you.
I was told immediately upon starting treatment for lyme that killing borrelia would cause release of heavy metals.
If you have impaired detox of heavy metals due to methylation issues then you will have symptoms and redistribution of heavy metals with lyme treatment.
You may also have a problem where your body does not make the antibodies to get rid of the dead bug debri such as is described by Dr. S. of Mold Warriors.
I have a number of methylation issues including the CBS upregulation. I also have the dreaded genotype via HLA testing based on Dr. S's theory. I've had lyme for decades so I had a heavy bacterial load. Had it not been for my LLMD knowing about all of these issues I would never have been able to tolerate treatment.
I am not a doctor and I don't know your history but just guessing I would say you were either having side effects from the drugs and/or you were herxing. Malarone is known to cause air hunger. Adding to your already toxic overloaded body with a heavy metal chelator probably threw you over the edge.
With the help of a doctor who knows what they are doing with heavy metal detox and hopefully borrelia detox issues I would get on a good safe heavy metal binder that does not chelate. I would also get on a binder for borrelia toxins. Once the toxin load is down I would re-start treatment.
Again, I am not a doctor and am not giving you medical advice. This would be my approach if I were in your shoes.
It pays to find an LLMD who knows about detox issues if you have the kinds of detox problems that I have. In addition, it is imperative to learn as much as you can about your issues because no matter how good your LLMD is, most will miss some things because it can be so complex when you start adding a CBS upregulation and/or other detox issues such as difficulty with biotoxins.
There are lots of posts in the archives to help you get started.
Terry I'm not a doctor
Posted by nefferdun (Member # 20157) on :
I think you are both right. I read DMSA can cause everything I experienced. I just sent in my test for the methylation cycle tests. It takes 3 months to get back but in the meantime I am eliminating everything with sulfate and I ordered some supplements to help lower ammonia.
As my brain is so compromised, I just can't focus and remember well enough to figure this out for myself. That is another reason I am so anxious. I have a lot going on in my life outside of lyme so I am trying to identify and solve and lot of problems.
I am going to pm you Terry to ask who your doctor is. I am all over the place trying to figure out what to do.