Elevated c4a and suspected lyme disease

[Jenn1302]

Hello Everyone,

Over the past 3 years my health has been declining and I've developed multiple conditions. My doctor recently checked my c4a levels and they came back really high and now he suspects that I may have lyme disease.

I have the following conditions and symptoms (all have developed within the past 3 years):
Autoimmune thyroiditis (elevated Tg and very high TPO).
Interstitial cystitis.
Chronic dehydration (I drink lots of water but it doesn't seem to help).
Muscle spasms/twitching all over my body.
Heart palpitations - PVCs, PACS (mostly singles, some couplets and triplets).
Intestinal bacterial overgrowth.
Enlarged pores on face.
Pale skin.
Dry skin (comes and goes).
Anemia that comes and goes.
Borderline low magnesium (I consume lots of magnesium).
Low vitamin D.
Thyroid hormones fluctuations (between hyper, hypo and normal).
Skin itchiness that comes and goes.
Eosinophilia.
Elevated c4a. My c4a level is 12000 ng/mL (reference range: 0-2800)
Excessive sleep (comes and goes).

Does this seem like it could be Lyme Disease?
Does anyone else here suffer from similar conditions or symptoms?

Thank you in advance.

[mojogal]

I did ABX for 2 years and I did not get well do have been on an herbal treatment for almost a year and finally turning a corner.

[JackieCalifornia]

Sounds like you are making progress -- this is good!

Everyone here has a different history on how they were diagnosed, by what kind of doc, what infections we have in addition to Lyme, and how we were medicated (herbal vs pharmaceuticals), and how we responded to treatment.  All of those are some of the reasons the docs are confused, and never mind how confused we the patients can be!

That said, I'm happy to share with you the path I went down with Lyme, but don't be surprised if there are differences among the histories you read here and how your own diagnosis and treatment progress.  It's part of why the docs are so confused:  Lyme, she is tricky, and some approaches work better for some of us than others of us.  Some of us go the herbal route, some use only pharmaceuticals, others blend the two approaches, preferably under a doc's guidance to avoid unintended conflicts of meds and herbs.

How long before I started feeling better?  It was a slow process, because it takes a while (often measured in months, not weeks) for the treatment to work, and then the body still needs time to repair and recuperate.  Think how you have felt after major surgery, if you've had it, and it's not unlike that.  I never felt worse while being treated than I did when I had untreated Lyme, it's just that recuperation can be a while.  Also know that treatment for Lyme is not as quick as for, say ... an earache:  Lyme bacteria reproduce very slowly compared to most other bacteria, and it is when the cell wall is ruptured as the bacteria reproduce that the bacterial DNA is most exposed to the effects of the antibiotics given to treat Lyme.  Specific antibiotics can enhance that attack on the bacteria, too.

I think a fair rule of thumb is that the longer you've been ill before treatment begins, the longer it will take to get well.  Someone else in my family wasn't as ill as I was (but also had Lyme and one other co-infection the same as mine), and they recuperated more quickly than I did.  Everybody's different, due to age, and to other existing medical conditions, and how much rest and how little stress you can arrange for during treatment, and so on.  Just knowing that treatment was underway was a big lift for me, and I finally could relax and let the meds do their work, instead of fretting over what was making me ill.  Slow and steady does it, but do be sure to get enough sleep and eat well.  Rule of thumb might be that you'll need as long to get well as you were ill.  It was about a year of each for me, and then a little wobbly for a while after that.

My doc didn't do herbs -- he's an old-fashioned antibiotics kind of guy, and it worked perfectly for me and my also-ill family member.  Some people don't tolerate some of the antibiotics as well as I did, and the combo of co-infections makes a difference in what treatment is given, whether antibiotics or herbal, and how effective it is.  There may be co-infections that were not initially diagnosed, and so a wise doc will keep an eye out for changes in symptoms that might signal a previously hidden co-infection that needs separate attention.  Thus another short detour in treatment.

I began to feel better very very slowly from the very beginning, and there was no big bang when suddenly I felt super-duper.  The antibiotics I was on were specifically for first babesiosis, and then when that was done, meds specifically for Lyme, but different docs may use different meds, and also may change meds as the results are noted during treatment.  There's not one-size-fits-all.

My doc insisted that patients take probiotics along with the many months of antibiotics, in order to replenish the 'good' bacteria in the body which are accidentally killed while the bad Lyme bacteria are being killed by the antibiotics.  My doc preferred Florastor for this purpose (which is a brand name for generic Saccharomyces boulardii, aka S.boulardii), because it is not killed by the antibiotics used against the Lyme, and so can be used alongside the antibiotics with no worries.  That makes perfectly good sense, because treatment is for months, and over that period of time, the patient would run out of healthy bacteria in the gut due to the action of the antibiotics if it were not replenished.  It turns out that I am sensitive to S. boulardii, and it began to take over my gut instead of protecting it.  It's apparently a rare reaction, and the other person in my family who was treated with the same meds and supplements I was had no trouble at all with S. boulardii.  The other option is to take the more usual kinds of probiotics, like acidophilus; it just needs to be dosed a certain chunk of time [maybe an hour] before or after the antibiotics.  That approach ultimately worked for me.  

My Lyme doc wasn't much interested in vitamins etc., but I did some reading and began to take basic vitamins and supplements that anyone with a serious illness would do to bolster the body.  Vitamin C, vitamin B, magnesium, and others.  I still take most of them today, just because I figure it can't hurt.  And Gummy Bears.  Gotta have my gummy bear vitamins everyday.  :)

That was it.  My doc didn't do any treatment other than antibiotics of various kinds, depending on my co-infections, but I understand that some Lyme docs do have a preferred list of vitamins and supplements they recommend or insist on.  

I tried to eat very healthy food, with a good balance of protein, vegetables, some fruit, and dairy, with as few additives as possible and freshly grown when possible (rather than canned or processed).  I was working from home because I was too ill to hold down an office job, so it was easy to control my diet.

My doc didn't do herbs or cleanses:  just antibiotics plus the probiotics to replenish the 'good' bacteria killed off when the 'bad' bacteria were getting hammered. There are some herbals that may be as effective as pharmaceuticals, and it's often mentioned in the comments here.  It's certainly worth looking into.  Pharmaceuticals and herbs are all chemicals, and it's just a question of what works.  I would be certain to keep the doc informed about all the meds and supplements I was taking in addition to what the doc is prescribing or recommending, to avoid conflicts and problems among the various chemicals.

A number of posters here following the all-herbal treatment route, and it's worth looking into.  Antibiotics did the job for me, tho, and I would willingly go that route again, perhaps along with some herbals.  The important thing is to be sure the herbs don't conflict with the antibiotics and that the herbs are effecting against whatever infections you have.

So, bottom line is that everybody responds differently to Lyme and the co-infections and the various treatment approaches, so stay nimble!  

Others here may have comments also, and the one thing we all find out sooner or later is that Lyme is tricky and keeps us and our docs on our toes.  Go for it! -- it's definitely worth doing to be well again.

[Jenn1302]

Thank you all for your responses. JackieCalifornia, I am really glad you're doing well now :).

After seeing that my c4a level is high, my doctor started suspecting Lyme and tested me for it. I don't know exactly what tests he ran and the results aren't back yet.

Several doctors have told me to take magnesium and that the palpitations and the spasms could definitely be related. I've also been told that my body is failing to absorb magnesium, iron, vitamin D and zinc. I currently take Magnesium citrate, iron, vitamin D and zinc everyday.

I live in Massachusetts. I've seen at least 15 different doctors before anyone started suspecting that I may have Lyme disease. I started seeing my current doctor relatively recently. I don't know if he's a Lyme specialist, but he is an integrative medicine doctor.

JackieCalifornia, you said that your treatment lasted a year. How long did it take before you actually started feeling better? Also, what was the treatment like (if I may ask)? What medications were you on? Were you on a special diet, supplements, parasite cleanses or herbal medications?

[LazyMoose]

My C4a was also elevated, and came down after a couple re-tests with antibiotics and natural supplements that boost the immune system.

Then I went off ABX, symptoms came back - I wondered what another C4a test would show, but didn't do it again.

C4a can be marker of more than just lyme, its used a lot in mold cases too.

[mojogal]

Dr Burrascano is now using the C4A instead of the CD-57 for a Lyme Disease disease indicator. I have many of the symptoms you mentioned so it can be seen in Lyme.

[JackieCalifornia]

Welcome to the Lyme page --

Sorry to hear about what you have been going through -- glad your doc is continuing to think and ponder.

Lyme is tricky, in that it can have many different symptoms, and each person may have an assortment of them that doesn't look like anyone else's -- which makes diagnosis difficult.  I personally went through 20 MDs before Dr. #20, in desperation, tested me for Lyme, and I was positive for Lyme and another infection the 'Lyme' ticks often carry.  So I hear you, and we're not alone in all this.

Everyone's symptoms and test result can vary, because Lyme affects each of us differently in some ways -- and also, about half the time, the 'Lyme' tick brings with it one or several additional infections (as I had too) that confuse the symptom array and the testing.  

Has your doc tested you for Lyme and any co-infections the 'Lyme' ticks often carry as well?  I don't see that in your list below.  

There are two kinds of tests often used for Lyme:

-- the traditional tests, ELISA and Western blot, which measure your immune system to see if you are producing antibodies against a Lyme infection, and

-- a newer test, called polymerase chain reaction (or PCR), which looks in your blood for bits of DNA from the Lyme bacteria.

ELISA and Western blot are often done together, but an important weakness of both these tests is that they are looking *only* for your body's immune system reacting to the presence of Lyme bacteria, but Lyme has the ability to suppress the immune system ... which means the test may be negative -- but that could be because the Lyme bacteria are suppressing evidence of the infection.

A more advanced test used by Lyme specialists (often in addition to the ELISA and W.blot tests) is the PCR test, which looks in your blood for direct evidence of infection:  that is, finding the DNA, or genetic material, of the Lyme bacteria themselves.  This avoids the problem of Lyme suppressing your immune system, and the test is therefore more accurate than the ELISA/W.blot combo.

Many of the symptoms you list above can be found in Lyme.  For example, the low magnesium (Mg) levels:  Lyme bacteria use Mg in their reproductive process, and can leave the patient with very very low Mg levels in the body.  Taking Mg supplements is quite useful, and I took them myself.  Non-Lyme docs don't seem to understand this, but it works.  Any formulation of Mg that ends in '-ate' is supposed to be the most absorbable, such as Mg malate, orotate, citrate, aspartate, and some others.  I have read that the American diet is often deficient in Mg anyway, so when the Lyme starts slurping it up too, it's easy to get depleted.  

Tho I am well now, I still take Mg everyday, for the reasons just stated -- not much Mg in the American diet.  Epsom salts baths are another way to take Mg, by absorbing it through the skin, but I don't have the patience, so I take the Mg capsules!  

Muscle twitching and heart palpitations (the heart IS a muscle) can be due to low Mg too.  I hope your doc mentioned that.

It's too bad that it has taken so long for your doc to consider Lyme, but it's never too late!  Your bio doesn't say where you are located, but in some areas it's easier to find Lyme specialists than in others.  If your doc is willing to do some reading and learn, then he can perhaps oversee your treatment, but you might want to cut to the chase and find a Lyme specialist.  There is unfortunately much blind ignorance among too many docs, who refuse to believe that Lyme is anything serious and are afraid to go against the entrenched know-it-alls who think Lyme is no big deal and a couple weeks of doxycycline will fix you right up -- but that doesn't work if you've been infected for anything longer than a very short while.  And doxy doesn't cure other infections the 'Lyme' ticks often bring.  Hence the need for a Lyme specialist who understands all this.  

Your bio doesn't say what area you live in, and in some states, the medical boards are very restrictive on what docs are allowed to do in treating Lyme.  It's a crazy, Alice-through-the-looking-glass situation, but it's because the docs who first 'discovered' Lyme  not so many years ago are so vain about their discovery that they have locked onto their initial impressions of the disease and refuse to progress in understanding the illness and treating it fully.  Docs who are not experts in Lyme too often defer to these smug docs, and patients are the ones who suffer from inadequate diagnosis and treatment for Lyme and any co-infections.

If your current doc has an open mind and is willing to learn, that might work, but if an experienced Lyme doc is nearby, you might want to cut to the chase and go there instead.  Too many docs are afraid to step up, and instead defer to the stuck-in-the-past docs who refuse to acknowledge significant developments in the field.

ILADS (short for International Lyme and Associated Diseases Society) is the main voluntary organization for MDs who have more progressive thoughts and open minds about Lyme diagnosis and treatment.  You can email to    -- contact  [at]   ILADS   [dot]   org --   and tell them where you are ['near Toledo OH'] and they will send you names of nearby Lyme specialists who think the ILADS way.  

(You will also see the term LLMD used here and elsewhere:  it's not a degree or title, it's just patient slang that is short for 'Lyme-literate MD', meaning a doc who truly *understands* Lyme as run-of-the-mill docs don't.)

You can also post a new message here saying 'Need LLMD near [Toledo OH]' so that it might catch someone's attention who can then send you a private message through this website, with recommendations for a doc.  We do NOT post doctors' names here in public, because in too many areas, the docs who don't understand Lyme can try to get the LLMDs in trouble for diagnosing and treating more aggressively than so-called mainstream medicine.  

If your current doc is willing, s/he may be able to help with the guidance of an LLMD on what to test, what labs to use, and what treatment approaches to use against Lyme and the other infections the Lyme bacteria so often carry, but my preference would be an experienced LLMD if I were again dealing with Lyme.  

I know all this sounds crazy, and I wouldn't have believed it either, but this really is the situation today.  It is changing, but not soon enough or fast enough.  If your doc is open-minded, you might guide him/her to 'Dr Burrascano's Treatment Guidelines' on the ILADS website.  You might want to read it to, but it's a big bite all at once, so easy does it.

I just read your symptom list again, and most of your symptoms I have had or read or heard of others with Lyme also having.  But remember, everybody is a bit different.  That's why finding a Lyme-savvy doc is SO important.  

My treatment for Lyme and babesiosis (a common co-infection carried by the 'Lyme' ticks and similar to malaria) took about a year, which is not uncommon, and treatment ended for me more than 5 years ago.  I am quite well, and hope you will find the same result.  You go!  Let us know how we can help.  

And PS there is a Lyme documentary from a few years ago called 'Under Our Skin' that you might want to watch.  Some of those shown in the movie are pretty bad off, but don't let it frighten you into thinking you will just get worse or get new symptoms ... you likely won't feel any worse than you do now, as you go along getting well.

Keep us posted!