I am new to this forum. For the past two months I have been in and out of doctor offices more than I can count now.
It started in April 2014 when I developed Bell's Palsy. I noticed everything started to go downhill from there. One year later I started to develop it again April 2015. I felt all the signs of it coming back.
Anyways I keep having muscle cramps and fasciculations all over my body. Face, scalp, arms, legs, anus( yes there) and I had a cramp so strong it ripped open my incision from my hernia surgery I had a few weeks ago.
I have been having memory problems. That really started bad about a month ago. I will be doing something and forget what I am doing. I am 30 year old male. I will go to clock out of work and forget my code.
I work as a chemist and when I go over to the cabinet to get a chemical to make something I will walk over there then start walking around because I forgot what I was going there for. This has happened alot lately. My eyes are very sensitive to bright light and I am having transient mood swings, bad ones.
I was at the neurologist this past Monday and had an EMG and nerve conduction test performed, I already had MRI of head, EEG, and EKG done. I was diagnosed with benign fasciculation syndrome.
Sometimes I can be sitting still and my heart will start pounding and my blood pressure will jump from my normal bp about 120/80 to 210/170 - 150/95. This happens sometimes but not all the time.
Once I was walking in the store and the blood pressure was so strong I was deafened by the sound of blood flowing through my carotid arteries. At least I think that is where it was coming from.
I have been put on lyrica and klonopin to stop the fasciculations but they still happen. I will have nightmares almost every night. I cannot remember one night in about 5 months where I have not NOT had a dream.
I remember one time being bitten by something not sure what it was and a bullseye rash formed but I do not know if it as a tick or not. I live in mid Texas region.
I did have lyme disease test. I showed positive for the ELISA and negative for western blot, however for band 41 I was positive. According to the paperwork it required two bands and band 41 was one of them.
The strange thing is that my mother is having bad joint pain, and she is severely tired all the time. She had Lyme test ran and she was positive for Elisa and negative for western blot but had one of the two bands which was 23.
We both many years ago lived way out in the country and had dogs and such which would come and go outside. I dont know if this is what we have but as time goes on I feel more tired, irritable because of the side effects. Sometimes I have night sweats.
I did have Epstein-Barr virus test was well and that showed I had it at some point in my life even though I do not remember.
Any thoughts? Like right now just sitting my muscles in my right arm hurt.
Thank you for your time.
ANeg
[ 09-20-2015, 09:57 PM: Message edited by: Aneg ]
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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Carol in PA
Frequent Contributor (5K+ posts)
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posted
Hi Aneg, sorry that you're here, but I think you're at the right place. The first seven posts on the Medicial forum have a lot of information for you to read.
Many of your symptoms look like low magnesium, which is not surprising if you have Lyme Disease. The Lyme bacteria use up the magnesium in our cells, leading to many problems.
I suggest that you eat foods high in magnesium and take supplemental mag. Dark chocolate Almonds, almond butter Cashews, pumpkin seeds Beans, kidney beans, baked beans, bean soup, rice and beans, bean burritoes.
When I first found LymeNet, I spent an hour or two every day for almost two months reading posts and taking notes, before I even registered. I began treating myself with Cat's Claw, until I could find a doctor. This herb stimulates the white blood cells to attack Lyme and other bacteria in the blood.
Read as much as you can, and ask questions.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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dbpei
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posted
So sorry for what you have been going through. Your symptoms sound very frightening and also sound very much like Lyme disease. From all of my reading, a bulls eye rash and/or Bells Palsy are enough to confirm a diagnosis of Lyme disease. When you add on all of the other medical problems you have experienced, there is no question.
The testing is poor with many false negatives. There is much misinformation out there about this disease because of some nasty politics and money to be made by continuing to cover up the truth about the damage that this disease can cause. I never would have believed this could happen a few years ago.
There is a huge rift between the mainstream medical community and the many Lyme Literate doctors (LLMD's) who are willing to risk their licenses to treat this scary illness because either they, themselves, have suffered from Lyme disease or they have had loved ones suffer with it.
Lyme disease attacks so many different parts of our bodies and affects each one of us differently, depending on where the bacteria have taken over and acclimated if you were not treated soon after the bite.
There is someone else who recently posted from Texas that is new to this forum as well and she had been having difficulty finding a good LLMD to give her the treatment she needs. Please read this post and take some of the advice offered to her.
I know this is so hard when you feel like your brain is not working as well as it used to. Sadly, Lyme disease can cause some cognitive loss, but this is reversible with the right treatment. Besides this wonderful forum, here are a few good places to start better understanding this disease:
It is so scary to be going through what you are going through. Many on this forum relate to your experience, unfortunately. Try to educate yourself as much as you can about Lyme disease and welcome! You will get some good support here.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Thank you. I have had many blood tests ran. Magnesium levels are fine. CPK levels are high. I have been on three different antibiotics in 1 month time span. Vancomycin IV during surgery, Azithromycin due to pleurisy 1 week after surgery and cefdinir.
I am on up to 300mg of lyrica daily. I keep having involuntary muscle spasms in random places. In my abdomen and face. I keep having dreams every night and they do not go away. I cannot remember a night where I did not dream. I am laying in bed today because it hurts too bad to move. Among the drugs I am using is hydrocodone, tramadol ( these two not taken together at the same time, taken depending upon severity of pain) xanax, klonopin, ondansetron for nausea and lyrica for neuralgia and spasms.
I am waking up with headaches everyday and go away shortly after waking up.
I contacted a local lyme disease specialist last night via e-mail. I am hoping I can figure out what is going on.
If this is not lyme disease then I have no idea what is going on. I know I just want to cry because it is destroying my life. Since the Bells Palsy episodes I have quit college and have no intention on returning. I can barely go to work now and I often wonder if I will lose my job. They will tolerate this only so long.
I do appreciate the support from you all.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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posted
Also wanted to note that even right now there is a huge area below my elbow on my right arm that feels like its on fire when touched.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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dbpei
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Member # 33574
posted
I am on up to 300mg of lyrica daily. I keep having involuntary muscle spasms in random places. In my abdomen and face. I keep having dreams every night and they do not go away. I cannot remember a night where I did not dream. I am laying in bed today because it hurts too bad to move. Among the drugs I am using is hydrocodone, tramadol ( these two not taken together at the same time, taken depending upon severity of pain) xanax, klonopin, ondansetron for nausea and lyrica for neuralgia and spasms
It is very likely that you are suffering from Lyme disease. But you are on many drugs that may be interacting with each other.
Lyrica alone can cause nightmares and sleep disturbance. Klonopin, Xanax and pain killers are all addictive and can take many months or more to eventually wean off of. You need a professional to help you to do this slowly and safely.
I am so sorry this has happened to you. You need a very good LLMD and/or integrative physician to help you.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Thank you. I do understand these drugs have side effects. I have worked in the pharmaceutical industry for some years now and have a strong knowledge base on how drugs work and the pharmacodynamics behind them.
I had only started taking lyrica the past 30 days. These symptoms have been going on for months. I cannot hardly fall to sleep so I use the xanax to put me to sleep. I know it is a hardcore combination going on here but it is barely working. If I do not take the Klonopin and Lyrica together I will get severe spasms that lock me up.
I tramadol and hydrocodone are for the pain related to my hernia repair I had 1 month ago.
The thing is, and I was just on the phone with my mom and she mentioned what you had said about the drugs, all these problems started right after developing Bells Palsy. At that time I did not take any medications except on an as needed basis for anxiety.
I just keep having the worst mood swings, and yes I can attribute that to the medication.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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posted
My thing is... since the ELISA is positive and the western blot is negative even though one of the bands was present, can I still have it even though the western blot fails.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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posted
The band that showed up was 41 on the western blot.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Yes you can have Lyme with negative Western Blot! I had a positive ELISA followed by a negative western blot in 2006. I was never given any antibiotics and years later, developed sudden hearing loss, head vibrating sensations, tinnitus, buzzing, odd sensations throughout my body and much more.
Lyme disease was later found in my blood through PCR testing, which is indisputable. I had started to notice that I had mood swings, increased anxiety, difficulty sleeping and trouble concentrating and multi-tasking. There were many other symptoms that developed over time.
I am sorry about all of the pain you have had to endure. Surgery or a very stressful event in your life can sometimes cause Lyme disease that had been in remission or not active, to come out full force. It sounds like this might have happened with you.
Please try to see a good LLMD or an integrative physician who will try to help you to get to the true cause of all of your symptoms. I just came across this website for Texas Lyme Disease Association that was linked from a very reputable source.
Use this website to educate yourself about Lyme disease, to find a local support group and to find a good doctor. Please take care and get the help you need.
Posts: 2386 | From New England | Registered: Aug 2011
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quote:Originally posted by Aneg: My thing is... since the ELISA is positive and the western blot is negative even though one of the bands was present, can I still have it even though the western blot fails.
- Yes. Absolutely. Happens every day in America! You need a better lab for the Western Blot. The regular labs do a lousy job of testing for the bands. Many of the labs don't even test for EVERY possible band!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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The number of people exposed is in the millions. The reason you can't get treated is they have decided that only early disease merits diagnosis and treatment. The bacterium itself is the most bizarre human bacterial pathogen known, and is poorly understood.
They don't know how many people are carrying a permanent relapsing brain infection. you can't get diagnosis or treatment because they have to pretend it doesn't exist and use labels like 'post lyme' and 'CFS' etc. for those who manifest illness.
Look at what Steere did in his 1992 study which is the foundation for the CDC serodiagnostic standard. He and others often look back on this and refer to a 'normal' control, but in fact the control was taken from sick people...MS sufferers, CFS sufferers, in sum, conditions which could have been caused or complicated by late Bb infection. Moreover, he threw in 25 syphilitic patients which constituted 20% of the control. Hoever, syphilis itself has an annual US incidence of 3 per 100,000.
This statistical chicanery, which fudged the result at 41 kDa on Bb blot by many multiples, is significant, because syph serum will cross react at 41 kDa to Bb western blots. It allowed them to 'swift boat' the importance of the reaction to 41 kDa, which is the earliest and most consistent human ab response to Bb infection, being present in all stages as opposed to the rest of the proteins which are variably expressed according to stage, tissue type, even temperature.
Flagellin {41kDa} is necessary for Bb to survive under all conditions, and is constantly expressed, including in late CNS infection. Yet they chose to swift-boat this response.
Why? It's for political and economic reasons. telling the truth about diagnosis and treatment results in mass panic and probable economic collapse/political revolution. it's likely a bioweapon. North American disease is different from European disease...lack of CSF antibodies, for instance.
A much larger range of serum resistance to host species in wild{allows Bb to infect a much wider range of species, important in disease spread and maintenance in wild}. The CDC has found that Bb 31 goes intracellular in CNS cells.
Telling the truth threatens the careers and livelihoods of the very individuals who control this issue and who have actively lied and deceived and otherwise operated a scientific propaganda campaign for the past 15+ years, profitting from the campaign as they went.
Lyme disease, which in the US also perhaps includes other pathogens notably a bioweaponized bartonella, threatens the entire establishment. If late disease was rare, we'd be able to get treatment. Unfortunately, the EIS/CDC,DOD totally screwed this up and tried to make money off of the disease, making profitability their first priority as opposed to protecting the health of americans.
Think about this...Allen Steere wouldn't listen to Polly Murray in early 90's when she reported a big incidence of neuropsychiatric disease in lyme. She had to call Fallon. Now, Fallon has overwhelming evidence of a serious disabling relapsing brain condition which is not easily treated.
Global hypoperfusion on spect/pet ain't normal folks. Don't you think the CDC etc. should be breaking their balls trying to figure it out? Instead, we see nothing at all, only continued attempts to deny illness and obstruct treatment.
Obviously, they know what is going on, and have determined that the best course is to do nothing, to cover up, knowing that in doing so, they are condemning large numbers of people to perpetual diagnostic and treatment hell.
Think about it. It's a horrific scandal and I'm not sure how much longer these *******s can keep control of it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Thank you all. I can type all day how I feel lousy and the myriad of issues I am having. It makes me upset because I have frankly given up on many things. You know I work as a chemist at a manufacturing facility where they make supplements, what is sad the other day on one of the boxes it said the ingredient could probably cause cancer. It is sad how corrupt this world is becoming. I watched a DR Phil thing on youtube and one doctor was trying to say chronic LD does not exist. How sad.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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posted
Please so register with the TXLDA and give us your address. We have a graduate student who created at GIS, first of its kind RISK LD Map of Texas. it would be interesting to see where you're area falls in and we document that,
thank you!
Posts: 532 | From Texas | Registered: Oct 2004
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this, click on the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
Hey Dal123 if this is Lyme Disease which I personally suspect it to be I cannot be certain where I picked it up.
There are three distinct areas where I may have gotten it. Atlanta, TX.... Domino, TX...... Fort Worth, TX...
I strongly feel Domino, TX is where I got it from. My dad lives in that region and at one point had a Collie and she had ticks.
The December of 2013 I was at his house cleaning the backyard where the collie was. She passed away. I was raking the backyard and it is very possible some got on me then.
I know it would be possible since the winters in Texas are not always cold and I am sure they are active in the winter.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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posted
Also I know that no one can post the name of doctors on here but can someone if anyone knows of a doctor in my area, PM me please.
My area is listed, you can Google the initials.
Thank you.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Aneg, Texas is not a great place to find a good lyme doctor. Texas threatens its lyme doctors and gets them to move or stop practicing without notice. Then, if they start up again a year or so later, they do it to them again. So, there really are few lyme doctors there and no top notch ones.
Because of the sorry state of affairs in Texas, Many folks from Texas are coming to the D.C. area for testing and treatment for lyme disease and it coinfections.
If you would like the name of the doctor I am sending them to, just let me know. Everyone is very happy with him.
I can send you many happy patient reports. He follows the Burrascano protocol. If you are not familiar with that, it is here:
It is at the top of Medical Questions forum on LymeNet.
Burrascano was the lyme disease pioneer and the #1 lyme doctor in the world before he retired a few years ago. They came from every country on the globe to be treated by him.
The doc I recommend can see you in a few days. Let me know.
I don't think you would regret it. After the first in person visit, you can do telephone or Skype appointments with him monthly. So, there would be little travel involved.
At least half of all lyme patients travel out of state for their care. Good lyme doctors are just few and far between.
The doc is the key to the diagnosis and for getting rid of this horrendous disease. I can't emphasize that enough. The doc is the key.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Please listen to TF and get to a LLMD out of state where you can get the proper dosages of antibiotics. There are Drs here that treat but keep you half dead because the TSBME won't allow higher dosages of certain antibiotics, ie my DOG got 400 mg of doxycycline, but my TX dr wouldn't give me more than 20o mg doxy, even though the pharmacist said I needed 400 mg for acute LD. The TX Dr said it was not the standard. go Figure. Dogs get better treatment than humans, and get this, my dog weighs 1/2 of what I do and got twice the dosage I needed as a Human!
Posts: 532 | From Texas | Registered: Oct 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has(including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
The specific form of exercise that will boost the immune system and prevent a relapse is 1 continuous hour of weightlifting every OTHER day. A full body workout must be done each time. This is a MUST if the patient is ever to get well. Read it in Burrascano.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
This forum is a library full of information.
Don't get me on this one. What if I went out of the country for the medications and brought them back? I know some people who get some things from Mexico and gets then across the border with no problem.
It seems like a bad idea but if that were to be last chance before getting to LLMD.
The one thing that ticks me off is that insurance does not support getting well. It is very expensive. My fear is that I will not be able to afford it. The doctors I called want about 400-575 to see me for first time.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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posted
Aneg, yes I just received a diagnosis of Lyme also, after years of health problems.
I have an appointment with an LLMD in a few weeks and just to see the Dr will be $550. All said and done after lab work my first appointment will be around $1,200!
It's crazy! This government has forced us to either never get well, or go bankrupt trying. I am so disgusted about all I am learning about this horrible disease!
Posts: 66 | From New York | Registered: Sep 2015
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posted
Thankfully for the mean time my PCP today did give me abx, something for my bp which is spiking and something to dtops the muscle spasms.
My new PCP is actually sincere and said it was a shame my old PCP did not take care of this years ago
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Aneg, it takes about 10 years for a very smart doctor to become good at treating lyme disease. That means, he is seeing many, many lyme patients for 10 years.
If you look at the Burrascano Guidelines, you will see that there is no set treatment, ABC, that the doc is to give the patient. That is why it takes so much expertise before a doctor is able to cure anyone of lyme.
The doc has to first discover everything wrong with the patient (nobody has JUST lyme disease), try various meds and see if they get bad reactions to them, help them through Herxheimer reactions with detoxification techniques, and figure out what special supplements the patient needs due to the unique depletions that lyme has caused in that person's body.
So, the chance of you being able to treat yourself with meds from wherever is about zero. This is a difficult disease to cure!
So, I hope you can see that you want the most experienced doctor you can find. That gives you the best chance of getting rid of this horrendous disease.
Too bad people often don't save money. With this disease, you must call upon your savings to pay the medical bills that will result. Or, you can put it all on a credit card.
Otherwise, you have to ask family or church to help you pay for that expensive first appointment.
The doc is the key to regaining your health. So, I advise you to get to the very best lyme doctor you can possibly afford. And, the sooner the better.
This disease just continues to progress. So, you will eventually lose more and more functionality.
Having been in the lyme world for over 13 years, I have seen people lose jobs, lose health insurance, then their credit cards, house, spouse, friends, etc. in that order.
Finally, after they have absolutely no resources left, they realize that they didn't go about trying to get rid of lyme disease the best way.
So, get to a great doctor while you still have resources. If you wait too long, you won't have any options. Then you will be left with trying to treat yourself as best you can and the chance to get your life back will be almost nil.
I don't want to scare you. I just want to advise you that lyme is an extremely, extremely complex disease. So, get to a good doc and pay for his expertise to have the best chance of getting your normal life back.
The doc is the key to getting rid of these diseases. Burrascano says that if you have had lyme for at least 1 year, you HAVE coinfections also. 100% of all lyme patients sick at least a year have coinfections and at the 1 year mark, that is when the immune system is significantly compromised (like with AIDS), so the body will NOT be able to overcome the illness on its own.
See page 3 especially including this quote:
"Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels)."
Don't underestimate your enemy or you will likely regret it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
While on antibiotics, be sure to take a good probiotic a few times per day. Otherwise, you can develop yeast in your gut (also called thrush in the mouth; a white coating on the tongue when you first wake up).
Get a refrigerated one from the health food store. It will be expensive.
Take the probiotic 2 hours after the antibiotic so it is not simply destroyed by the antibiotic in your stomach.
Also, drink some kefir daily and eat yogurt. And, finally, eat the Burrascano anti-yeast diet that you will see near the end of the Guidelines.
If you do all of this, you will preserve your gut. If you keep eating sugar and flour products, one day you will begin your battle with yeast. That is a bad day. So, do all you can to avoid ever having yeast.
Read about this subject in Burrascano. I have summarized what he says in his Guidelines. See, for example, page 28.
Posts: 9931 | From Maryland | Registered: Dec 2007
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