Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So... here's the deal... and history.
I didn't feel good.. and during that time I noticed my C4 was very high.
Several months later.. taking nothing in the meantime... I felt worse. And my C4 was MUCH higher.
So I take a little doxy. And as usual when taking the good old "standby".. feel a little better.
So is it- as the theories go- Mold or Lyme causing the high C4?
And will my C4 still be high on next go around after taking the full course of doxy? It would be interesting to see. If it is.. does that mean NOT Lyme and maybe mold?
Or... if it is lower and I feel better on just doxy.. does that mean it is Lyme and not mold?
Observation- When taking cholestrymine before, several years ago.. it was horrible. The bad reaction hit right on schedule and NEVER quit.. even months later I was still wickedly sick! And even months after stopping the cholestrymine I stayed sick with no end in sight.
Out of desperation I eventually took some doxy.. even when I was told there was NO Lyme.. ONLY neurotoxins and mold... but absolutely no Lyme.
And, once starting doxy, I immediately got better on the doxy (also had two different labs test show CDC positive for Lyme during that time when I was being told NO Lyme.. and a Bowen test was positive to boot.)
My figuring after all that tells me it WAS Lyme.. NOT mold.. and the 6 weeks of antibiotics I was given originally before taking the cholestrymine didn't "cure" me... even though I was told it would cure me for sure.
I am curious because...
My doc just saw my C4 test results... which went up dramatically rather than down.. and ordered me to take some Actos.. which I've taken before and was ok with... and Pravachol.. which I think is like cholestrymine or Welchol, which sucked... never again.
So NOW... was the C4 level high because of Lyme... and perhaps taking doxy will do the trick again.. meaning infection... and we should leave it at that?
OR.. should we take other drugs (actos and stuff) and not use the doxy.. and assume I don't have an active infection but maybe mold?
Comments appreciated... if you can decipher that dribble.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I have had mold allergies for years and at one time (not too long after first infected with Lyme...hmmnn)would get very sick whenever exposed to mold. At the time, I must have lived on the moldiest farm you ever saw. Geez Louise was I sick all the time.
It was during that time I was first introduced to alternative medicine. Where the allergist's meds had failed me miserably, herbs were the hero that got me back on track. It sold me on alternative care. I never considered Lyme as my ELISA test had come back negative.
Anyway, it is quite possible the two go hand-in-hand.
My mold reactiveness has never been the same although I can have a mild reaction that lasts only a few minutes if I'm exposed in an enclosed environment. Stepping out into the air eliminates it. Molds around the barn have not bothered me for 10 yrs now.
Oh well. No solutions from me. Just wanted to let you know you probably are battling both Lyme and mold.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
Cobweb
Unregistered
posted
From one moldy oldy to another-I haven't a clue.
The contractor who bought our old house called to tell me that he found a LARGE colony of mold in the wall off the kitchen fed by a leaking pipe.He thought maybe I should mention it to the doctor-but of course I forgot.
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Tincup,
I do remember you going through that ordeal with the cholestrymine and how sick you got from it.
I don't know what a C4 is, so I can't be of much help, but maybe you could take some doxy just to see how it makes you feel? I would go with anything that makes you feel better.
Sorry I couldn't be of more help, sure hope you feel better soon.
Hugs.... Posts: 6638 | From Michigan | Registered: Jun 2001
| IP: Logged |
posted
Whether it is lyme or mold, you are dealing with toxicity. Have you tried homeopathic detox? My daughter did very well with the CSM/Actos protocol initially. But as soon as she stopped treatment, the symptoms slowly returned because she still had active lyme and probably mold exposure both. She now uses homeopathic detoxing remedies daily. They do help.
Have you been tested for the nasal bacteria that Dr. S talks about in his book? It requires a nasally transported antibiotic to eradicate it. Maybe that would help.
And...you can always try muscle-testing. I know it is an "out-of-the-box" practice; but we have resorted to it, at the advice of our llmd, who has had good results with it. If it is working with my daughter, we should know soon, as she just started treatment for bart, which is now the primary troublemaker, according to the muscle-testing.
Anyway, good luck finding your way through this maze! One of these days, we will all look back and wonder how we ever got through it!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
| IP: Logged |
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Hi TC!
I seem to have both problems very clearly, mold AND Lyme. So does my son. For us, the high C4a seems to go with infection, rather than mold issues.
For me, cholestyramine was like a wonder drug. It relieved pain, cleared my brain, all kinds of good things. It brought most of the inflammatory markers we were testing back into line, BUT NOT C4a.
For me, long term treatment with Bicillin seems to be slowly pushing the C4a down. It still isn't well in the range we would like to see, but my symptoms are much improved. Even Dr. S is now saying he thinks a high C4a may indicate ongoing infection and a need for treatment.
I collected a lot of data in my doctor's office on this, and we definitely see C4a higher in those with Lyme, while C3a may show more in mold issues. Still too early to tell, because so many people have both things going on.
C4a seems to go down more slowly than some of the other markers, which adds to the confusion about what is causing it to be elevated in the first place. However, if you are feeling better when taking doxy, I would go with that.
posted
Hi have both conditions: allergies to molds & Lyme. I have to avoid molds in food, homes & anywhere else they might be. Getting exposed to mold makes me sick for days and days!
What is C4 & C3? I have had all kinds of tests done: RAST, Scratch, Sublingual Challenge, but I do not know what C4 or C3 is.
What homeopathic/alternative meds work for removing sensitivities to molds?
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
It's so nice to see so many people put something useful on the table.. even if they don't have direct answers. Just responding with something to consider gets my brain in gear and makes pieces of the puzzle easier to fit together.
Thank you all very much for sharing. However.. to the buck-a-roo that said..
"From one moldy oldy to another-I haven't a clue."
HI've got to say... HA!
`````````````````````````````````````````````````
Luvs2..
Very interesting. Any particular herb protocols that brought you back? Would luvs2 hear about it.
`````````````````````````````````````````````````
Cobweb...
I am rubber .. you are glue.. whatever you say to me bounces off and sticks to you!
`````````````````````````````````````````````````
Beverly,
I smile to see you. And your response.. "I would go with anything that makes you feel better," may sound simplistic.. but ya know what... it works for me! After all, isn't that the ultimate goal here? Sometimes we just don't know! Thanks for bring the complexities back dowwn to earth for me... and I think I will follow that advise. It sounds REAL good at this point.
````````````````````````````````````````````````
Lymeout...
Yes.. I did do the whole kitt and kaboodle with the nasal thing too. Unfortunately, once it's done it can return with the next breath you take cause it is everywhere. Just like you saw with your daughter.
However, I have seen folks take the cholestrymine protocol and do wonderfully on it. When they stopped and the symptoms returned.. the repeat of the protocol worked once again. After watching this happen for years now.. my theory.. and I am not a doctor.. is that unless we kill the infections.. the toxins or whatever (dead keets, rotting proteins from their decayed bodies, etc) will keep building up and causing problems.
And yes to the muscle testing. Worked well for me.. but I am not always near a place to have it done. But it has been right on when I have had the opportunity to use it.
Thanks for the help. ````````````````````````````````````````````````
River.. so good to see you rolling! Thanks for the input. You said.. "a high C4a may indicate ongoing infection and a need for treatment."
That is the feel I am getting just from experience so far. Actually common sense spells it out pretty well I think.. which is what I've had to rely on over the years until the medical literature catches up. Unfortunately, my claim to fame.. or cry for help perhaps... has been that I am at least 2 years ahead of the literature concerning what is happening to my body!
You said.. "For me, cholestyramine was like a wonder drug. It relieved pain, cleared my brain, all kinds of good things. It brought most of the inflammatory markers we were testing back into line, BUT NOT C4a."
THAT is exactly the data I needed here. I think I will experiment with myself.. as no one will let me experiment on them anymore... HA!
Since, as Beverly remembered so well, I did terrrible on the cholestrymine... and I have a history with Lyme.. and I have a high C4 right now.. and the doxy makes me feel better for whatever reason...
Let's stick with doxy.. as Beverly suggested.. and then test later to see if there is a reduction in the C4 level.
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Tin, have you had IgE Rast tests to see what molds you may be reacting to?
Posts: 2451 | From Lyme Central | Registered: Aug 2001
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey Tincup,
I cant add anything more here, but I also have high C3a and c4a....as you saw in a post of mine.
I think you are right in you being 2yrs ahead of the medical world.
Too bad we couldnt get someone to study us lymies...i think we make interesting specimens
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
posted
If the Doxy is helping, then it has to be a bacterial infection like Lyme or Bart, because it won't kill mold or fungus as far as I know.
The internet says that a high C4 is indicative of Cancer or Colitis (hope not), and it doesn't correlate it with mold at all.
How high is your C4, and why were you thinking mold or fungus?
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
High C4a can be Lyme or mold. I think it is unwise to suggest it is related to cancer without looking at more likely causes. Read the Mold Warriors book.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
posted
ROCHESTER, MINN. -- Mayo Clinic researchers say they have found the cause of most chronic sinus infections -- an immune system response to fungus. They say this discovery opens the door to the first effective treatment for this problem, the most common chronic disease in the United States.
An estimated 37 million people in the United States suffer from chronic sinusitis, an inflammation of the membranes of the nose and sinus cavity. Its incidence has been increasing steadily over the last decade. Common symptoms are runny nose, nasal congestion, loss of smell and headaches. Frequently the chronic inflammation leads to polyps, small growths in the nasal passages which hinder breathing. "Up to now, the cause of chronic sinusitis has not been known," say the Mayo researchers: Drs. David Sherris, Eugene Kern and Jens Ponikau , Mayo Clinic ear, nose and throat specialists. Their report appears in the September issue of the journal Mayo Clinic Proceedings.
"Fungus allergy was thought to be involved in less than ten percent of cases," says Dr. Sherris. "Our studies indicate that, in fact, fungus is likely the cause of nearly all of these problems. And it is not an allergic reaction, but an immune reaction." The researchers studied 210 patients with chronic sinusitis. Using new methods of collecting and testing mucus from the nose, they discovered fungus in 96 percent of the patients' mucus. They identified a total of 40 different kinds of fungi in these patients, with an average of 2.7 kinds per patient. In a subset of 101 patients who had surgery to remove nasal polyps, the researchers found eosinophils (a type of white blood cell activated by the body's immune system) in the nasal tissue and mucus of 96 percent of the patients.
The results, the researchers say, clearly portray a disease process in which, in sensitive individuals, the body's immune system sends eosinophils to attack fungi and the eosinophils irritate the membranes in the nose. As long as fungi remain, so will the irritation. "This a potential breakthrough that offers great hope for the millions of people who suffer from this problem," says Dr. Kern. "We can now begin to treat the cause of the problem instead of the symptoms."
More research is underway at Mayo Clinic to confirm that the immune response to the fungus is the cause of the sinus inflammation. The researchers are also working with pharmaceutical companies to set up trials to test medications to control the fungus. They estimate that it will be at least two years before a treatment will be widely available.
The researchers distinguish chronic sinusitis -- sinusitis that lasts three months or longer -- from acute sinusitis, which lasts a month or less. They say that the cause of the acute condition is usually a bacterial infection. Antibiotics and over-the-counter decongestants are widely used to treat chronic sinusitis. In most cases, antibiotics are not effective for chronic sinusitis because they target bacteria, not fungi. The over-the-counter drugs may offer some relief of symptoms, but they have no effect on the inflammation.
"Medications haven't worked for chronic sinusitis because we didn't know what the cause of the problem was," says Dr. Ponikau. "Finally we are on the trail of a treatment that may actually work."
Thousands of kinds of single-cell fungi (molds and yeasts) are found everywhere in the world. Fungal spores (the reproductive part of the organism) become airborne like pollen. Some people develop allergies to fungi. The new evidence from the Mayo study suggests that many people also develop a different kind of immune system response.
Posts: 789 | From CT, | Registered: Jun 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Better Health Guy..
I had to exit quickly... didn't mean to ignore you or Kayda.
Good to know you will be getting opinions. Hope you will let us know!
```````````````````````````````````````````````
Kayda,
Sorry to hear you have a double whammy. It can't be good! You asked, what is C3 and C4?
May I suggest you do a search here on LymeNet? I have seen quite a number of posts about it.. with lots of info and speculation... and I am sure those posts could explain it a lot better than I could.
For mold problems you may want to check out the health guys site. I am pretty sure he must have some info and/or links there. Or again.. a search here will pull up tons of posts.
I'm not trying to avoid your questions.. not at all. I am just short on time and energy.. and all the right words tonight.
I'll bet you know how that feels!
````````````````````````````````````````````` Froggy!!! Nice to see you!!
You said.. "Tin, have you had IgE Rast tests to see what molds you may be reacting to?"
Never heard of them. Any more info as to where/how they are done? It could help me and others if you wouldn't mind sharing. THANKS!
PS- When they do the tests, does it hurt?
HA!
`````````````````````````````````````````````````
Cave..
A very common sense approach.. and imagine that.. YOU said it!
~smile~
I tend to agree with your theory.. as that is my core feeling too. Not till these extra tests started being tossed in the mix did I try to mesh the theories together. Thanks!
`````````````````````````````````````````````````
Hey Can't..
Long time no see! You said.. "I think we make interesting specimens."
Well you hit the nail on the head there. If I were a doc or researcher I would think we are facinating!!! Aside from the fact we are stuck with this and it makes us miserable.. it is a way cool thing to study!
I don't understand why ducks want no part of it. I guess it is too much of a challenge or would actually require them to THINK!
````````````````````````````````````````````````
Hey mic..
You said about doxy.. "because it won't kill mold or fungus as far as I know".
You know, if it DID, that would really throw a monkey in the gumbo pot, wouldn't it?
As for the Cancer or Colitis idea associated with elevated C4.. could be I guess? But that is why I would like to experiment. As for the mold connection.. a doctor working with Lyme and mold in folks seems to find high C4 levels in some patients.
I am not sure it is at all related to either.. or mold.. but it is interesting to a point that it happens. Of course the better info would be what are the consequences and the cure.. IF it means anything at all to anyone.
But science takes time.. so we will have to wait and ponder all the bits and pieces in the meantime. ``````````````````````````````````````````````
I got about 4 hours sleep last night.. so I bid you all a do do.
posted
Teeny says : "You know, if it DID, that would really throw a monkey in the gumbo pot, wouldn't it?"
Yep! If you've discovered a new use for Doxy, we might start calling you Dr T in the future.
Your post says C4. Scott jumped on me for being an idiot and not knowing that C4a is associated with mold, but that's different than C4, so what do you have; elevated C4, or C4a? A high C4 is not associated with Lyme or bacterial infections.
"Complement components C3, C4 and C5 are large glycoproteins that have important functions in the immune response and host defence [ 1 ]. They have a wide variety of biological activities and are proteolytically activated by cleavage at a specific site, forming a- and b-fragments [ 2 ].
A-fragments form distinct structural domains of approximately 76 amino acids, coded for by a single exon within the complement protein gene. The C3a, C4a and C5a components are referred to as anaphylatoxins [ 2 , 3 ]: they cause smooth muscle contraction, histamine release from mast cells, and enhanced vascular permeability [ 3 ]; they also mediate chemotaxis, inflammation, and generation of cytotoxic oxygen radicals [ 3 ]. The proteins are highly hydrophilic, with a mainly alpha-helical structure held together by 3 disulphide bridges [ 3 ]."
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
| IP: Logged |
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I've been told somethign about my C3 and C4 and don't understand it. (I believe they were low.) I was told my complements are messed up.
(Absolutely nothing to do with mold as far as I can tell. It appears to be immune system stuff.)
It may be connected to the remark that my B cells and T cells are not talking to each other. But I'm not even sure about that.
I see micul's post and don't understand it. I'll google some tomorrow... too confused and tired tonight.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I never heard of C4 or C3 or C4a either. Can someone point to some references?
To some extent I wonder about all these tests. Well, if you can afford them why not, but their meaning is all still very unclear I bet.
If you treat with something and it helps, then you know it's helping. So Tincup if doxy helps, then that's a good idea.
Cholestyramine mops up toxins---it also makes some folks really constipated. I don't tolerate sugar well (candida) and the only version I knew of in my first few months of lyme had sugar. I tried it for a few days and it completely cleared up my symptoms but my bladder started bothering me (sugar), so I went off. Years later when I tried a sugarless version, I got totally constipated, burping etc. And my symptoms did not clear up.
My intuitive sense from that is 1) in the early months, I was still pretty healthy...later on...my whole system was sludged and couldn't tolerate it very well 2) in the early months, the inflammatory chemicals were an acute response to lyme...later on they became chronic, a self perpetuating loop.
I think there is actually a middle road, therefore, between the "autoimmune" hypothesis that most of us on here hate, and the chronic infection hypothesis. That is, I think its chronic infection but it alters the system and the system gets in its own inflammatory feedback loop where it ALSO is creating the inflammatory chemicals and some of the painful symptoms. I suspect one reason it takes so long for people to get better on abx may not just be because of long periods to kill intracellular bugs, but also because it takes a long time for the immune/neuro system to realize conditions are different and it can calm down and stop going off in an inflammatory feedback loop of its own. It's like a certain setpoint has to be passed with the bugs where they are below a certain level, for the body itself to realize this and shift gears.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I agree. Lyme or mold are C4a. If you were not referring to C4a which may be the case, then my comment may not be relevant.
c3a and c4a are discussed in the Mold Warriors book in reasonable detail. Take care
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Wow, you are all so knowlegable and informative, but my head is reeling!! I may have both...I was exposed to a huge amout of mold in a woodland apt. I lived in...walls turned green, piles of green/blue powder on tables in the morning...the air felt alive! I had nowhere else to go at the time, so I stuck it out too long. At any rate, this sounds crazy, but has anyone ever had clicks and pops (sounds and feelings) in the head, when re-exposed to the same mold? I can detect what and where mold is, by those clicks in my head! My sister tested me, by sneaking things in the house, that had been in the apt., and every time I would say that I was clicking...she believes me now. This has been going on for 5 yrs...I'm very sick now, and posted under a migraine thread. My symtoms seem to fit Lyme, with a few exceptions, so I'm in the same boat as TinCup and others...how do I start diagnosing? I have no insurance, so....oh well....I'll keep reading and learning all I can.
Posts: 2 | From Milford, CT | Registered: Mar 2007
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
You may want to consider seeing the doctor that wrote the Mold Warriors book. He deals with mold issues and genetic predisposition, etc. in a comprehensive manner.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
No idea Tincup... but do you have a dehumidifier? I got one a couple years ago as I live in a pacific northwest climate. MOLD CITY!
It's really really really helped! Much better I think than my friends' air purifiers.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ah yeah.. interesting and good stuff. But it is 4 AM.. so I'll respond later... if you please.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Got Lyme? Fungus is amungus TC epecially lyme treated people because of abx's ya needs to calm immune system at the same time as killing fungus's? And restore balance?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
artemisinin seems to be working on fungus for me. Better than 200mg flucanazole I have to take during the break from it.
Can't take it too long though- nuerological toxins...
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
"Even Dr. S is now saying he thinks a high C4a may indicate ongoing infection and a need for treatment."
Possible reason :I heard a rumor a while back that his own went up after a tick bite..
My vote will not count but I vote Mold and Tick Borne Diseases. They are both neurotoxins and hard to distinguish between.
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
High C4 levels...
May indicate an inability to breakdown fat to convert to glycogen when glycogen stores are kapoot.
The enzyme, acyl-CoA dehydrogenase, does this...helps us to breakdown fat -> more glycogen on "as needed" basis.
First we use glycogen (from sugars and starches) then we breakdown fat to provide glycogen. Finally...protein will be broken down.
Our cells MUST have glycogen.
(We normally only store a day's worth of glycogen in our system...liver. Bb is avid for sugar and it appears starves us of this nutient.)
"Older patients who present chiefly with progressive muscle involvement may respond to
riboflavin (Vitamin B2) supplementation and
have a generalized multiple acyl-CoA dehydrogenase deficiency.
SCAD enzyme is the most vulnerable dehydrogenase to low riboflavin levels."
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
![[Razz]](tongue.gif)
![[confused]](graemlins/confused.gif)
![[sleepy]](graemlins/sleepy.gif)
Printer-friendly view of this topic