LNB Lyme - Managing Symptoms

[drc5]

I had a positive titer for Lyme in June of 2009. Before the positive test I had flu and neurological symptoms for 10 days or so but no bite site was seen. I was tested then but the test was not positive. A few days later I showed up with multiple rings over my body, I was tested again and it come back positive. I took the 3 weeks of Dox and I seemed well. About 6 weeks later I started having digestive problems, anxious depression(which I'd never had before) brain fog and feeling wired but tired. I hardly got any sleep at all.

Since then I've tried psychotropic drugs and hormone balancing - testosterone, hydrocortisone and Armour thyoid. I haven't had any sustained success with anything so far. Occassionaly, I'll get a week or 10 days when I'm back to normal. Then it fades. These good times started when I first took testosterone, 3 weeks after starting Lexapro, when I went off benzos and Lexapro and added herbs and licorice, and finally when I first started hydrocortisone. These times are like a honeymoon that fades.

I have found that the hydrocortisone helps digestion and bodily inflammation but seems to have no effect on the anxiety/depression.

At this point I'm completely discourage and don't what to do. My best thought is to get off the hydrocortisone and Armour. I'm trying to get a second opinion from the Columbia University Lyme Research Center get their best opinion on my condition and possible treatment options.

Finally, I just hope I can find something to deal with this terrible anxiety/depression.

Dave

[JackieCalifornia]

I agree with Gorby about magnesium relieving many symptoms, both physical and mood.  It won't fix everything fully, but it may well help -- it did for me, in a significant way.  Before I was diagnosed with Lyme, I ended up in the ER twice in a week with severe heart irregularities relieved very quickly with an IV bag of electrolytes ... which happens to include ... mangesium.  Felt so good I walked home.  Of course the docs thought I was just a head case, but that's another story.

Here is a website I just found with what looks like thoughtful information on magnesium issues:  http:// ods. od. nih. gov /factsheets/ magnesium/

(Take out the spaces in that url before copying to your browser)

Considering it's an NIH website, it seems fairly broadmined about magnesium issues:

"Magnesium: What is it?
Magnesium is the fourth most abundant mineral in the body and is essential to good health. Approximately 50% of total body magnesium is found in bone. The other half is found predominantly inside cells of body tissues and organs. Only 1% of magnesium is found in blood, but the body works very hard to keep blood levels of magnesium constant [1].

"Magnesium is needed for more than 300 biochemical reactions in the body. It helps maintain normal muscle and nerve function, keeps heart rhythm steady, supports a healthy immune system, and keeps bones strong. Magnesium also helps regulate blood sugar levels, promotes normal blood pressure, and is known to be involved in energy metabolism and protein synthesis [2-3]. There is an increased interest in the role of magnesium in preventing and managing disorders such as hypertension, cardiovascular disease, and diabetes. Dietary magnesium is absorbed in the small intestines. Magnesium is excreted through the kidneys [1-3,4]."

It goes on to say:  "Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness. As magnesium deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures (sudden changes in behaviors caused by excessive electrical activity in the brain), personality changes, abnormal heart rhythms, and coronary spasms can occur [1,3-4]. Severe magnesium deficiency can result in low levels of calcium in the blood (hypocalcemia). Magnesium deficiency is also associated with low levels of potassium in the blood (hypokalemia) [1,19-20]."

AND it says something I don't remember hearing before:  antibiotics can inadvertently cause a magnesium loss that leads to a deficient state.  (My LLMD never told me to keep up the Mg supps during months and months of abx treatment ... but looks like it's a good thing I was doing it on my own.)  Check out the link for full details.

I'm NOT medically trained, and everyone should check with their own medical practitioners before doing anything.  Just sayin'.

Let us know what you do and how it goes!  Best wishes --

[gorbybelle]

Low magnesium - which is common with lyme - can cause 'ringing in the ears', anxiety, twitches. muscle spasm/cramps and a whole host of other stuff.

As 'JackieCalifornia' said - it would be highly likely that your lyme infection was not adequately treated.   If I were in your shoes I would definately find an LLMD.

I had very bad anxiety/depression from lyme - still have it BUT much reduced following treatment with antibiotics, for the most part Doxycycline.

I am not medically trained in anyway only a 'lymie' - I would resist taking steroids atleast untill I had consulted an LLMD.

Gorbs

[drc5]

JackieC, Thanks you for all the information.

I think you are correct that the Columbia group is bigger on research and diagnosis than on treatment. The value of their opinion would be to let me know where I stand with regard to the various "markers" they have developed on the CNS/brain involvement. This information, I would hope, would be useful in suggesting which treatments have a higher probability of success. In the end I believe they would suggest or refer me to potential treatments.

As it is now I've been going through treatments that seem logical to me based on my symptoms and lab work. The psychotropics were just a reflex action I tried last spring because of the severe depression/anxiety symptoms. Working with balancing hormones was the result of lab work showing deficiencies with testosterone levels, thyroid function and cortisol levels. These deficiencies probably pre-dated the Lyme but were tolerated in the overall scheme of my body's function.

Once Lyme was added to the other microbiological junk that I carry, like everyone, my immune/endocrine/neurological systems have not been able to achieve enough stability to allow me to function at more than 50%.

The only debilitating symptoms I have are the anxiety/depression. When I can resolve these, I'll consider myself 95% well. I had hoped my efforts with psychotropics and hormone balancing would be the answer. They are not the as best I can tell. The only thing that will relieve them for most of the day is a small dose of a benzodiazapine. At first I took these on a regular basis but that was a dead end because of tolerance and dependency. Now I try the small dose once every 2-3 days and it really helps. Since they effect GABA receptors it seems logical to find a none harmful way to deal with this. Currently I'm using various supplements, exercise, yoga and mindfulness.

If anyone has ideas on how to deal with the anxiety/depression/tinnitus/head pressure/electricity-in-the-veins/facial tics around my right eye experience, please let me know. It would be worth everything to me.

Peace to all,

Dave

[JackieCalifornia]

Sorry to hear you are not feeling well -- trust me, we understand how you are feeling and the journey you are still on.

I don't know anyone who has gone to the Columbia U. Lyme center, and don't know what kind of review they may be able to do -- sometimes research groups are notably short on the treatment-and-advice aspects, but giving it a try seems a very reasonable thing to do.  If they are not into treatment aspects, they may be able to refer you to a practitioner nearby.

I'm NOT medically trained, but for what it's worth, it sounds like your diagnosis and treatment were doing all right until the treatment was stopped at 3 weeks.  The more 'progressive' view is that Lyme must be treated for considerably longer than the usual bacterial infections, because bacteria are weakest when reproducing, and Lyme bacteria have an usually slow reproductive cycle ... therefore, months of antibiotic treatment is required to eradicate Lyme.  In addition, Lyme bacteria have other tricky features (and I expect there are more not yet fully understood), including the ability to hide in cartilage and in so-called biofilms inside the body, where blood flow is low and the immune system cannot readily locate and attack the bugs.

I would also ask whether you were tested for 'co-infections', such as babesiosis, bartonella, and a few others.  The tests are different from tests for Lyme, and the treatments may also be different.  These diseases have their own set of symptoms too.

As to the meds you have taken or are taking, I have learned from personal experience and reading that Lyme suppresses the endocrine system, including thyroid function.  I am now taking thyroid meds, but suspect that I was deficient even pre-Lyme.  Still working to get the dosing right, but it helps a great deal in how I feel and how productive I am at work.

I have not taken anti-anxiety meds like Lexapro, so can't comment, but anxiety is definitely part of Lyme+.  Once you are in treatment for Lyme, you may find (as I have) that anxiety recedes a great deal and even goes away for days at a time.  I look forward to it being gone for good!

If you are not sleeping well, you might try taking magnesium supplements (anything ending in '-ate' I read is easily absorbable ... malate, aspartate, orotate, etc.), because Lyme is said use magnesium (Mg) in its reproductive cycle, which leaves Lyme patients deficient in Mg.  Blood tests are apparently not accurate measures of Mg levels, because most Mg is inside the body cells, not in the blood stream, so when intracellular levels are depleted and you ache and can't sleep and are very anxious, it might be because your Mg levels are dipping too low.  It works for me.  I had an MD warn me that too much Mg can damage the kidneys, but he didn't define 'too much.'  I have read elsewhere that before you OD on Mg, you'll get diarrhea ... like when grandma used to take Milk of Magnesia for constipation.  

One thing you may wish to question is the use of hydrocortisone/steroids.  Their purpose is to suppress the immune system, but Lyme is a bacterial infection which needs to be fought against by the immune system.  Steroids are sometimes prescribed by docs who don't understand what they are dealing with.  (The official position of mainstream medicines is that Lyme is easily cured by a short course of antibiotics and that any later symptoms are not the continued presence of Lyme, but an over-reaction of the immune system to a now-vanished infection.  It is on that slender reed that so-called mainstream medicine appears to lean in insisting on a few weeks of antibiotics as sufficient to cure Lyme completely...but continuing research into Lyme indicates the opposite.)

I would suggest strongly that you collect copies of all your test results and lists of medications and symptoms to date and find yourself an LLMD, meaning an MD who takes a more progressive view of Lyme.  This may be at Columbia or elsewhere; but it was the beginning of my recovery and that of many others here as well.  If Columbia can't treat you or refer you, here are some websites with referral functions (or they used to have them; I haven't checked them recently):

lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com

The main organization for LLMDs is:   ilads [dot] org
Under the 'About Lyme' tab is a link to Burrascano's 'Diagnostic Hints and Treatment Guidelines.'  Very informative.

Best wishes, let us know about your experience at Columbia, okay?  I'd be very interested to hear.