need help again: Anyone recovered from extreme weakness in arms and legs?

I am trying to learn this stuff one step at a time but I have so many issues that I need help with. In my original post, I layed out most of my story so all you helpful people out there would have a better understanding of my particular struggle. i am trying to think more positively and my biggest obstacle right now is the extreme weakness in my arms and legs. It is a wierd feeling, I have no sensativity in my limbs and no strength whatsoever. I am late forties and was always physically fit. I went to my primary care physician last week and she noticed when she checked me for "reflexes" with that little hammer device, I had absolutely none. She said thaty was "quite concerning". I assume it is all related to extreme weakness. I also get a wierd "buzzing" in my tailbone. Can anyone at all relate to this or have any idea what is happening and what I can do about it? My thoughts keep wondering to ALS for some reason. Hard to look at the bright side at this point. If this keeps worsening, I am afraid I won't be able to walk or anything else for that matter. It is almost like I don't even have the pain reception. I have had restless leg syndrome for decades, I have such poor nerve function in my legs now that I don't even hardly feel the restless legs anymore. Really hoping someone can help me on this one. Has anyone been in this situation and found a way through it? I wonder if it can be something to do with long term use of abx?  If I am sounding desperate, it is because I am. I need to start turning the corner on this disease, if not, I feel as though I am done for.

taysdad,

I have never been as sick as you obviously are. However, I spent 24 hrs a day with Heather when she was sick. I made it a point to observe her and to question her as to what was going on with her illness. Everything that we did was done with a view to observing possible cause and effect relationships. There were several things that really stand out. I can make some definitive statements with respect to Heather's treatments and their effects. These conclusions may or may not be applicable to the experience of other patients.

Heather's LLMD put her on a high dosage of Mepron and Azithromycin for her Babesia Duncani. She also started Heather on a high dosage of Ceftin for an introductory coverage of Lyme. After 5 months, the Ceftin was discontinued and Biaxin was rotated in.

My obervation was that her night sweats and deleriums were greatly diminished by the end of 5 months. I attribute that improvement to a somewhat effective Babesia treatment. However Heather progressively began to experience a generalized overall increase in new symptoms, and higher intensity of old symptoms. Her stomach also became a complete wreck, and her gallbladder pain became unbearable. She was unable to walk towards the end of that 5 months. When she started on the Biaxin everything became even worse, and she started to experience hallucinatory and delusional episodes.

We discovered that Heather had a very bad case of parasites shortly after she started on the Biaxin. We also had all of the antibiotics tested for compatibility for Heather. The testing revealed that they were all very toxic and downright poisonous to her system- especially the Biaxin.

Why didn't the LLMD test Heather for parasites, and why did he fail to test the medications for compatibility? This failure is incompetence and malpractice as far as I am concerned.

My theory was that the toxicity of the antibiotics added to the cumulative misery index for Heather. We immediately discontinued the antibiotics and put her on an antiparasital. Heather felt about 70% better within 3 days! After a few weeks we added in elements of the Buhner and Cowden protocols. My wife pressured me to find a new LLMD, and we added in 2 new antibiotics later, after we first tested them for compatibility. The Bactrim was only found to be mildly toxic, while the Minocycline was neutral. She was never as sick as she was when she was treated by the first LLMD with different antibiotics.

Eventually Heather's symptoms went away, and treatment was ended. She relapsed later, and we found a third physician that had the capabilities of restoring immune function. The others had no clue. Heather got well and stayed well.

My observation is that Heather's worst symptoms occurred when Heather was taking high levels of several highly toxic antibiotics. The second round of less toxic antibiotics had more tolerable effects. The treatment that Heather received during her relapse was completely nontoxic and introduced no new misery effects. She rapidly began to feel better.

My conclusion with regard to Heather's experience is that her antibiotics were part of the overall problem after treatment was started. If I may employ logic to answering your question, I would guess that her situation was not unique.... that there are probably other people in this world just like her.... maybe that includes you?

Your symptoms are horrible, but they are not hopeless. I have no doubt that the right physician with the right treatment could be the vehicle through which your health and vitality would be restored. There is definitely light at the end of your tunnel. You are definitely taking the first steps. Taysdad,I can see your wheels starting to turn.

Don

Post Edited (Heathersdad) : 12/31/2012 2:18:11 PM (GMT-7)

LOL!! You just described me!!! Every once in a while, I feel the need to run after a dog or run with the baby goats, or something equally foolish, and usually find myself looking around to find out who all saw me fall on my face!!

Fortunately(?), the muscle weakness and the muscle atrophy don't follow each other very closely from my experience and what I've read - but muscle atrophy does happen after a while.

I think trying to sort out which infections you have so that you can be sure to treat certain ones first so that you can heal from the others is about the hardest thing! There can be so many symptom overlaps! But if you have Babesia and/or Bartonella, please understand that those need to be treated before you can have much improvement with the Lyme infection. Things like parasites must be dealt with before much healing from any of these infections will happen.

We are here to help you sort this all out though! That's why I like to think of this as more of a community rather than just a forum! We have some of the bestest members right here!

Oh, traveler,

Does the weakness thing scare you as much as me or do you look at it as something that will eventually improve over time as you get better? Maybe I shouldn't try to forcast the future but worry about today.

Awesome, Taysdad!!! We are so glad that we could be there to give you a kick! LOL! I've needed several over the years of being ill to get back on track, or get started with something new.

The weakness thing scared the beejeebers out of me! Being rather physical (enjoying physical labor), the weakness made me worry that those days were over. I'm sooo very happy to report that that was NOT the case!! This spring hubby and I had 2 dairy goats to keep up with and a decent sized garden as well! This is a huge step in the right direction for me!!

Yes, you can get a co-infection testing kit from Igenex and have your PCP draw the blood for it - be sure to read all the instructions closely, as there is a time limit I believe for the blood to be processed properly.

For parasite testing, I would start off with asking your PCP to do a parasite stool test. See what those results are before going any further. You are quite ill so treating for something you don't have will likely do more harm than good.

You're doing great! One step at a time!! This isn't a race against time, slow and steady with all treatments and during all phases (unless there is an emergency of course!) is how you will heal the best.

Mystery Illness,

Your question is very thought provoking. You obviously are trying to be very open-minded and have even revealed that you have a slight bias. You are in a very good position right now. Your desire is not to win an argument, but rather, to get better. Part of the problem on a forum is that we can easily be misunderstood. and someone else will become defensive because of it. I am really encouraged by this forum however, as I feel that people are free to express their sincerely held opinion, and will not be attacked for it.

Your question has 2 separate issues. I will first address the timeline for improvement. It really varies from person to person. When Heather was at the 4 month point in treatment like you are, some of her her Babesia specific symptoms seemed to be improved, but her overall condition seemed to have deteriorated. That observation caused us to start to have strong suspicion that her antibiotics had become part of the problem, i.e Azithromycin, Mepron, Ceftin, and Biaxin. At the 5.5 month point in treatment, compatibility testing revealed that they were part of the problem. Also, Liver enzyme tests revealed that she had highly elevated liver enzymes. When antibiotics were discontinued, her liver enzymes eventually returned to normal. Could she have continued the same antibiotics or other toxic antibiotics for 1.5 to 2 years without expecting permanent damage? I know that her LLMD was very concerned about her protracted elevated enzymes. We later allowed Heather to be put back on antibiotics by her second LLMD. These were first tested for compatibility however.

Believe it or not, I do not hate antibiotics. In fact, every member of my family has used them on occasion when needed, i.e. prescribed by an M.D. We have never used them for over a month at a time however, other than for Heather's Lyme illness.

Dr. Dietrich Klinghardt is an M.D. He was trained to prescribe antibiotics, and he in fact did prescribe them early in his medical career. He gradually formed the opinion that the use of antibiotics was counterproductive, and that potentially herbals were as good or better than the best antibiotic. He uses mostly herbals and other "alternative" forms of treatment today as a result.

I read a lot of Dr. Klinghardts articles when Heather was very ill. He said one thing in particular that sent chills down my spine. He said that his observation is that when patients come to him after being on antibiotics for 18 months or more, that their immune systems were more depressed than his other chronically ill lyme patients. It was also less likely that the immune systems of those patients would ever become strong again. I had already spent enough time reading the posts on Lyme forums that I had formed a similar opinion. I have just seen several people with relapse reappear on this forum in the last couple of days. I see a lot of other people that consider themselves "cured," but they have to be careful not to exceed their "limitations." Simply put, we had higher expectations for Heather.

Heather's doctor, Dr. Jernigan does not believe that antibiotics are a bad choice for newly discovered Lyme. His opinion is that they should only be used up to a maximum of 4 months. After that point, the cumulative toxic and deleterious factor that they introduce is counterproductive to the overall result that the patient is seeking.

Every person experiences their own individual timeline for improvement. Is there a norm? I would certainly expect that you would see some improvement within the next 2-4 months, but it is unpredictable. The real question is- what is acceptable to you? I cannot answer that question for you. I too admit of my own bias. I trust Dr. Jernigan's opinion, and the accuracy of my personal observations.

The second issue is "compatibility testing" Some Chiropractors and many Naturepathic Doctors (ND)have frequency-based testing equipment that can accurately tell you how compatible or incompatible your medications and supplements are. In actuality, the tester is not testing the medication for toxicity. The tester tests your body's response to each medication or supplement. Is the medication right for you? Your body elicits a neurological response to everything. I am very pro-supplement, but I know that I wasted a lot of money on supplements that we didn't need before we used this type of testing. The generic name of this type of testing equipment in general is "Electro Dermal". Some of the specific equipment technology names are Computronix, Asyra, and Ondamed. Dr. Jernigan developed his own proprietary testing called "Bioresonance." There are probably others as well. "Muscle Testing" is a more crude way of detecting incompatibilities. Some people on this forum have both M.D.'s and N.D.s working to make them well. It might be worth your while to call around, and to see whether someone can test your medications.

I would encourage other people to chime in as well. I cannot prove any of what I have stated. It is only one person's opinion. Four months of treatment experience is probably insufficient to motivate you to make a change. I have found that time changes things, and is a great teacher eventually. You are on the right track by asking such questions! We all have to experience the learning curve. Most of us cannot escape it.

Don

Post Edited (Heathersdad) : 1/2/2013 10:01:24 PM (GMT-7)