If so, how was it dealt with?

My LLMD is speculating that some of my symptoms are caused by my immune system attacking my own body while trying to fight the lyme and has considered pulsing in an occasional steroid, believe it or not, on top of the abx to combat that reaction.

This seems to be somewhat unorthodox and counter intuitive. I asked my LLMD about immune system suppression and I was told that it takes long term steroid use to do that and this would only calm my overactive immune system down. I'm not the first patient that my LLMD has treated that required this type of therapy.

In general it is contra-indicated.

Some doctors use plaquenil, or antibiotics that may also have an anti-inflammatory effect, such as the macrolides.

The only time I have heard of the judicious use of steroids, was if there was an issue that was critical. e.g., someone was going to lose their vision if eye inflammation was not reduced quickly.

Even then, I believe it was only topical steroid use.

I was given large dossages of steroids and plasma pharesis. I spent three months in the hospital to get it under control. There is very little know about the disease. But steroids is one of the major treatment protocols.

I think you have to weigh everything. At the time the doctors were not even thinking Lyme. I felt worse when I left the hospital than the day I entered it. It was three more years before I got the Lyme diagnosis.

Unless there was a real reason, i.e. life threatning I would not do it, or at least I would seek a second opinion.

Treatment of this condition is one of the reasons for my post. The other is the actual autoimmune reaction.

2nd opinion is an option but wanted to see what kind of feedback I got.

I'm also not a doctor and I do know that it is normally contradicted but when I asked my LLMD I was told that you would think that it would be, but that pulse therapy and Plaquenil has worked before in people with autoimmune type responses to lyme.

I'm already on a Biaxin/Plaquenil combo.

Nearly dropped my drawers-he picked up my response and dropped the subject.

It does give food for thought, though, in some cases, doesn't it ? I rep[eat SOME CASES.

I'll definietly check out the Benicar info.

treepatrol,
I've been treated with:
2 months of Zithro then,
2 months of Doxy then,
2 months of Biaxin/Plaquenil w/6 weeks of IV Rocephin

My LLMD gave me one dose of Decadron as a trial. I actually did respond to it with a substantial decrease in my neuro/muscular symptoms.

I was previously diagnosed with CFIDS and FMS, and was being sent on my way to a rheumatologist to identify some other autoimmune illness when my WBs came back positive.

And steroids will reduce some of your symptoms. The problem is to whether that reduction in symptoms also carries a danger.

The steroid reduces symptoms because it reduces your immune system's response to the pathogen. This can have the effect of increasing your infection over time.

Steroids also have their own dangers, such as causing necrosis (death) of bone and other tissue.

Benicar, if the claims turn out to be true, does not actually suppress the immune system, but assists it in effectively dealing with occult (hidden) bacteria. It would, therfore, be much preferable to steroids.

I realize that it is possible that your doctor has had good experience with his protocol, it just runs counter to all that I understand.

Six months of treatment is not very long. At six months, I was just beginning to get some improvement after 11 years of infection. I'm only a few months ahead of you in treatment, but six months is when things seemed to shift.

Keep up with asking questions, do your research, and then you will have to make your decision.

Active Ingredients: Dexamethasone Oral
Representative Names: Decadron, Dexameth, Dexone, Hexadrol
Available Product Images:
Generic Available? A generic alternative may be available. Ask your doctor or pharmacist for more information.
For general information on generic drugs click here.

Who is this for?

Dexamethasone, a corticosteroid, is similar to a natural hormone produced by your adrenal glands. It often is used to replace this chemical when your body does not make enough of it. It relieves inflammation (swelling, heat, redness, and pain) and is used to treat certain forms of arthritis; skin, blood, kidney, eye, thyroid, and intestinal disorders (e.g., colitis); severe allergies; and asthma. Dexamethasone also is used to treat certain types of cancer. This medication is sometimes prescribed for other uses; ask your doctor or pharmacist for more information.

Everything I have read sofar is to steer clear of steroids.

What we all have to remember is that it takes time to beat this lyme it hides when we wak it and puts off protiens detramental to are systems it takes time for our body to flush the dead remains of it etc.

You need abx's that work over the cyst form as well as abx's that are putting a hurt on the spirochetes.
Plus we need to take our vitamins and acidophilis aand keep at it this road is full of lots of ups and downs. Hang in there.

------------------
Do unto others as you would have them do unto you.

Was taken off the IV for 3 weeks and put on a steroid pulse (every other day for two weeks). For about 1 1/2 weeks my symptoms were significantly better and I actually felt pretty good.

Then my infection flared and this time with a vengeance! So now I'm back on the IV again.

Needless to say, I don't think I'll be too keen on trying that again even though my LLMD is absolutely convinced that I'll need some amount of immune system suppression to eliminate all of my symptoms.

that's why steroids are not smart with lyme disease....

Believe it or not, some LLMD's have allowed their patients to take steroids in short durations. Why I have no idea...

They caused me nothing but grief and sent me backward in the progress department.

My muscle twitching seems to have an autoimmune component to it.

If I rate that symptom on a scale of 1-10 (10 worst) I normally have a 6/7. When I was off the IV and on the steroid it was a 1/2.

Other symptoms got much worse on the steroid over time, especially the muscle pains. They went from a 3/4 to a 10!

My husband was on the longest -- many months. His doc, a rheumatologist (and a very good guy, but this was 16 years ago...) upped his dose on them when we moved and my husband started a new job, and was having significant joint and muscle pain, fatigue, and headaches. He'd already been on several abx.

The honeymoon period was lovely. Then increasing weakness, muscle pain, rage (steroidal AND LD) and all the concerns about bone density and the immune system effects. My husband felt quite trapped in the protocol, because of the new job. Looking back we were both very muddle headed or we'd have never embarked on that tx for so long (or possibly at all).

Anyway, he had to withdraw slowly. How much damage was done to the immune system I don't know. There have been so many complicating factors, including H pylori, H difficile, yeast, and babs.

I have been undergoing treatment for lyme for six years..from IV to orals...been bitten and reinfected in between..

Now I have been diagnosed as having celiac disease...It's an autoimmune disease that is triggered by stress, physical, disease related, etc...in which the body makes antibodies against the lining of the small intestine.

This is VIP for lymies for three reasons in my opinion.
One, nutrient absorbtion is changed, sometimes dramatically. We can have severe vitamin and mineral insufficiencies.

Two, many of the symptoms are similar to lyme patients.

Three, how well oral drugs are absorbed is then brought into question.

All these years of oral treatments could have been merely scratching the surface...so IV may be in my future again.

Also, celiac doctors believe that the disease is found in 1 of 133 Americans. That is the prevalence rate in Europe. US doctors seldom look for celiac. The NIH is holding its first conference on it this month.

Testing for it is relatively easy...testing for the antibodies, followed up by a biopsy of the small intestine for certainty.

I spoke with a celiac doctor in LA last week who is VERY interested in the interaction of lyme and celiac, our tendency to low NK cell counts, etc....

Just another idea to throw into your mix...to consider..
Carol Ann

Since I have 27 years being familiar with the symptoms and being (mis) diagnosed with one autoimmune disorder after another - I speak from my life's experience and NOT as a Dr.

Firstly, I beleive that when when in chronically infected with a pathogen, you set up a positive feed back loop of chronic inflammation. The whole body becomes
overly sensitized - it reacts to things healthy people do not.

It's in a hyper state.
(I had food and chemical and temperature and sun sensitivities.

This is interpreted by the medical community aas "autoimmune" the body attacking it'self.
I disagree.

I had so many "auto-immune" symptoms, they finally settled on Complex Immune Disorder.

In the end, what they thought were symptoms caused by the many categories of auto-immune disorders were actually all caused by Lyme.

My many Drs. now, finally agree that ALL my symptoms were from Lyme ONLY because all my symptoms are gone and my blood panels look grets.
But they say "You're a rare case". I say "You guys aren't looking hard enough".

If you take steroids make sure is VERY short term - less than a month, lowest dose possible <7mg and that your on a good penetrating abx at the same time.
(The only other time I'd consider it was short term - high dose to save someones life).

Barb

PS your Dr. beleive in the theroy of molecuar mimicry (and probably beleives in post-lyme syndrome too). I'm sure I'd be
arguing theory with him if he were my Doc.

I did eventually seek a 2nd opinion from another LLMD. That doctor was concerned about untreated co-infections (bart, babs, and multiple strains of myco). Recommended that I talk to my LLMD about stopping the steroids.

The steroid dose that I was on was 8mg and because I was only on Biaxin at the time (steroids reduce macolide abx effectiveness) I probably was not on an adequate dose of abx.

breathwork, Did you develop the autoimmune disease b/c of the lyme or do you not know? I've had tons of autoimmune testing done and it all came back negative, but that was months ago.

Barb, I do agree with you both for the most part. I don't understand my steroid response though. I guess time will tell if just the abx will eliminate all of my symptoms. My current LLMD is not so sure. I'm certainly not planning on doing another steroid pulse anytime soon.

Most celiacs in the US are never diagnosed properly. I only found out because my mom was diagnosed, so I was tested. I chalked it all up to lyme. Then thought about the absorption of antibiotics...Mmmmm.

Check out www.celiac.com or www.celiac.org
There is lots of info on both sites.

Makes me wonder how many chronic lymies may be that way due to malabsorption due to undiagnosed celiac diseae?

You can get rid of the infection, or control the immune system. Either works in the short term. In the long term controlling the immune system alows the bacteria to multiply and leads to a full infection.

Steroids are needed for life threatening conditions like asthma, but long term they lead to all kinds of complications. You must get off them ASAP.

quote:

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Originally posted by Mathias:
Thanks for the posts. I'm glad that there are some others out there that have been told by their LLMD that their immune system not right.

I'll definietly check out the Benicar info.

treepatrol,
I've been treated with:
2 months of Zithro then,
2 months of Doxy then,
2 months of Biaxin/Plaquenil w/6 weeks of IV Rocephin

My LLMD gave me one dose of Decadron as a trial. I actually did respond to it with a substantial decrease in my neuro/muscular symptoms.

[This message has been edited by Mathias (edited 13 May 2004).]

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It is horribly depleted in this disease.

Mg and Ca are needed for us to make HEALTHY antibodies...to fight the various pathogens.

Mg and Ca are also needed in the "steps" our NK cells use to fight cancer.

Find my updated nutshell post. Cut and paste it and print it out for your doctor.

Pay close attention to Valletta's U.S. patent "magnesium for autoimmune" and the Romanian abstract to cure.

I have NEVER been tested for a Magnesium deficiency. I've practically have been tested for everything else.

tree, I like your line of thinking but autoimmune diseases can cause pain, so why can't an autoimmune reaction?

My pain level did increase substantially over time while I was on the steroid pulses. So that indicates reactivation or a still active infection to me. Since I've restarted IV Rocephin, I've had horrendous days but the pain has very slowly started to improve.

quote:

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Originally posted by Mathias:
.

tree, I like your line of thinking but autoimmune diseases can cause pain, so why can't an autoimmune reaction?

My pain level did increase substantially over time while I was on the steroid pulses. So that indicates reactivation or a still active infection to me. Since I've restarted IV Rocephin, I've had horrendous days but the pain has very slowly started to improve.

Even more interesting is that my presenting symptom (swelling and redness above my left eye) reappeared for the first time when I was on the steroid pulses. My LLMD said that pretty much confirms the infection has resurfaced.

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I dont like that word autoimmune lets just say what it really is immune reaction period
to infection.

The steroids good clue lyme loves steroids kicks it up big time. Stay off steroids hey but Iam no Dr but I have enough pain experience to know steroids kick it up.

Hey good luck hang in there this takes along time if you have been infected long then the cure takes longer.

quote:

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Originally posted by breathwork:
HI...
I'm not sure when the celiac was triggered since the symptoms are so similar...
Makes me wonder how many chronic lymies may be that way due to malabsorption due to undiagnosed celiac diseae?

[This message has been edited by breathwork (edited 02 June 2004).]

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Leaky gut is of particular interest to Lyme patients because all the longterm ABX we have done has totally altered the balance of intestinal flora.

Does this mean we are experiencing Lyme infection, which imitates other diseases, along with leaky gut, which imitates still others? A double wammy?

Anyway, here is the article:

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Altered Immunity & Leaky Gut Syndrome

by Zoltan P. Rona MD, MSc

The leaky gut syndrome is the name given to a very common health disorder in which the basic organic defect (lesion) is an intestinal lining which is more permeable (porous) than normal. The abnormally large spaces present between the cells of the gut wall allow the entry of toxic material into the bloodstream that would, in healthier circumstances, be repelled and eliminated. The gut becomes leaky in the sense that bacteria, fungi, parasites and their toxins, undigested protein, fat and waste normally not absorbed into the bloodstream in the healthy state, pass through a damaged, hyperpermeable, porous or "leaky" gut. This can be verified by special gut permeability urine tests, microscopic examination of the lining of the intestinal wall as well as the bloodstream with phase contrast or darkfield microscopy of living whole blood.

Why is The Leaky Gut Syndrome Important?

The leaky gut syndrome is almost always associated with autoimmune disease and reversing autoimmune disease depends on healing the lining of the gastrointestinal tract. Any other treatment is just symptom suppression. An autoimmune disease is defined as one in which the immune system makes antibodies against its own tissues. Diseases in this category include lupus, alopecia areata, rheumatoid arthritis, polymyalgia rheumatica, multiple sclerosis, fibromyalgia, chronic fatigue syndrome, Sjogren's syndrome, vitiligo, thyroiditis, vasculitis, Crohn's disease, ulcerative colitis, urticaria (hives), diabetes and Raynaud's disease. Physicians are increasingly recognizing the importance of the gastrointestinal tract in the development of allergic or autoimmune disease. Understanding the leaky gut phenomenon not only helps us see why allergies and autoimmune diseases develop but also helps us with safe and effective therapies to bring the body back into balance.

Due to the enlarged spaces between the cells of the gut wall, larger than usual protein molecules are absorbed before they have a chance to be completely broken down as occurs when the intestinal lining is intact. The immune system starts making antibodies against these larger molecules because it recognizes them as foreign, invading substances. The immune system starts treating them as if they had to be destroyed. Antibodies are made against these proteins derived from previously harmless foods.

Human tissues have antigenic sites very similar to those on foods, bacteria, parasites, candida or fungi. The antibodies created by the leaky gut phenomenon against these antigens can get into various tissues and trigger an inflammatory reaction when the corresponding food is consumed or the microbe is encountered. Autoantibodies are thus created and inflammation becomes chronic. If this inflammation occurs in a joint, autoimmune arthritis (rheumatoid arthritis) develops. If it occurs in the brain, myalgic encephalomyelitis (a.k.a. chronic fatigue syndrome) may be the result. If it occurs in the blood vessels, vasculitis (inflammation of the blood vessels) is the resulting autoimmune problem. If the antibodies end up attacking the lining of the gut itself, the result may be colitis or Crohn's disease. If it occurs in the lungs, asthma is triggered on a delayed basis every time the individual consumes the food which triggered the production of the antibodies in the first place. It is easy to see that practically any organ or body tissue can become affected by food allergies created by the leaky gut. Symptoms, especially those seen in conditions such as chronic fatigue syndrome, can be multiple and severely debilitating.

The inflammation that causes the leaky gut syndrome also damages the protective coating of antibodies of the IgA family normally present in a healthy gut. Since IgA helps us ward off infections, with leaky gut problems we become less resistant to viruses, bacteria, parasites and candida. These microbes are then able to invade the bloodstream and colonize almost any body tissue or organ. When this occurs in the gums, periodontal disease results. If it happens in the jaw, tooth extraction or root canals might be necessary to cure the infection.

In addition to the creation of food allergies by the leaky gut, the bloodstream is invaded by bacteria, fungi and parasites that, in the healthy state, would not penetrate the protective barrier of the gut. These microbes and their toxins, if present in large enough amounts, can overwhelm the liver's ability to detoxify. This results in symptoms such as confusion, memory loss, brain fog or facial swelling when the individual is exposed to a perfume or to cigarette smoke that he or she had no adverse reactions to prior to the development of the leaky gut syndrome.

Leaky gut syndrome also creates a long list of mineral deficiencies because the various carrier proteins present in the gastrointestinal tract that are needed to transport minerals from the intestine to the blood are damaged by the inflammation process. For example, magnesium deficiency (low red blood cell magnesium) is quite a common finding in conditions like fibromyalgia despite a high magnesium intake through the diet and supplementation. If the carrier protein for magnesium is damaged, magnesium deficiency develops as a result of malabsorption. Muscle pain and spasms can occur as a result. Similarly, zinc deficiency due to malabsorption can result in hair loss or baldness as occurs in alopecia areata. Copper deficiency can occur in an identical way leading to high blood cholesterol levels and osteoarthritis. Further, bone problems develop as a result of the malabsorption of calcium, boron, silicon and manganese.

The Causes

The leaky gut syndrome is basically caused by inflammation of the gut lining. This inflammation is usually brought about by the following:

� Antibiotics because they lead to the overgrowth of abnormal flora in the gastrointestinal tract (bacteria, parasites, candida, fungi) � Alcohol and caffeine (strong gut irritants)
� Foods and beverages contaminated by parasites like giardia lamblia, cryptosporidium, blastocystis hominis and others
� Foods and beverages contaminated by bacteria like helicobacter pylori, klebsiella,
� citrobacter, pseudomonas and others
� Chemicals in fermented and processed food (dyes, preservatives, peroxidized fats) � Enzyme deficiencies (e.g. celiac disease, lactase deficiency causing lactose intolerance)
� NSAIDS (non-steroidal anti-inflammatory drugs) like ASA, ibuprofen, indomethacin,
� Prescription corticosteroids (e.g. prednisone)
� High refined carbohydrate diet (e.g. candy bars, cookies, cake, soft drinks, white
� bread) Prescription hormones like the birth control pill Mold and fungal mycotoxins in stored grains, fruit and refined carbohydrates.

The leaky gut syndrome can cause the malabsorption of many important micronutrients. The inflammatory process causes swelling (edema) and the presence of many noxious chemicals all of which can block the absorption of vitamins and essential amino acids. A leaky gut does not absorb nutrients properly. Bloating, gas and cramps occur as do a long list of vitamin and mineral deficiencies. Eventually, systemic complaints like fatigue, headaches, memory loss, poor concentration or irritability develop.

Prescription broad spectrum antibiotics, especially when taken for extended periods of time, wipe out all the gut friendly bacteria that provide protection against fungi and amoebic (parasitic) infections, help the body break down complex foods and synthesize vitamins like B12 and biotin. Since this friendly bowel flora is killed off, the body now has no local defence against the parasites or fungi that are normally held in check. This then causes an inflammatory reaction leading to the leaky gut syndrome. Food allergies quickly develop and these may trigger the signs and symptoms of arthritis, eczema, migraines, asthma or other forms of immune dysfunction. Other common symptoms of this bowel flora imbalance and leaky gut syndrome are bloating and gas after meals and alternating constipation with diarrhea. This set of symptoms is usually labelled as IBS (irritable bowel syndrome) or spastic bowel disease and treated symptomatically by general practitioners and gastroenterologists with antispasmodic drugs, tranquilizers or different types of soluble (psyllium) and insoluble (bran) fiber.

The Leaky Gut and IBS

The mainstream thinking on IBS is that it is caused by stress. Irritable bowel syndrome is the number one reason for general practitioner referrals to specialists. In well over 80% of the cases, tests like the intestinal permeability test (a special urine test involving the determination of absorption rates of two sugars called lactulose and mannitol), CDSA or livecell darkfield microscopy reveal the presence of an overgrowth of fungi, parasites or pathogenic bacteria. The one-celled parasite, blastocystis hominis and different species of candida are the most common microbes seen in IBS. The only stress associated with IBS is that which is generated by infection and the leaky gut syndrome. If allowed to persist without the correct treatment, IBS can progress into more serious disorders like the candidiasis syndrome, multiple chemical sensitivities, chronic fatigue syndrome, many autoimmune diseases and even cancer. If treated medically, IBS is rarely cured. To treat it correctly, natural treatments work best and must include the removal of the cause, improvement of gastrointestinal function and healing the lining of the gut.

You are soooo correct! I have really not made a lot of progress with Dr. F. and have decided to seek a 2nd opinion on my treatment regime.

I would really, really appreciate any feedback that you can provide me on Dr. F either positive or negative. You are the first person on this site that I have met that has been seen by Dr. F. I haven't been able to get much in terms of feedback anywhere.

You can email me privately if you prefer.