Ive gone a long way with my issues as they have changed over the year...or years.
Ive gotten to tremors...totally stiff neck..numb face and head..constant headache. Now Im getting forgetful...hallucinations at night..like not knowing where I am..I can sit for minutes trying to figure it out.
Anyways the doc keeps checking for MS...Parkinsons...and thought my stiff neck was from Dystonia..which it wasnt.
Im on Gabapentin for headaches and tremor. Im also on a beta blocker to keep the heartbeat slower. Im also On a muscle relaxer for the stiff neck.
My question: Does Lymes cause an anxiety type feeling? Sometimes it feels I can jump out of my skin....but the drugs Im on keeps me from doing so...luckely. Muscles are so jumpy and tight...seems Im really messed up neurologically speaking. But perhaps the drugs are just helping me get through...as it keeps getting worse. Im getting numbness on my arms ..hands ..and feet now. Crazy how this keeps changing.
Docs dont know..keep thinking MS. I havent been diagnosed with Lymes...but every doctors asks about it...then does nothing. reg doctor tested me twice for Lymes...cheap test...negative. Sorry for the rambling...its tough to explain.
Thanks
Posts: 27 | From MN | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, indeed, LYME (without the "s") can cause every one of the symptoms you describe.
MS has often been misdiagnosed when lyme is the cause. Cpn (see www.cpnhelp.org ) can also cause MS, though, and other chronic "stealth" infections may, too.
Parkinson's has also often been misdiagnosed when lyme has been the cause. Heavy metal toxicity and chemical exposure can also be connected with or with lyme or other serious "stealth" infection.
"Stealth" implies that it may evade the immune system & detection and that most doctors are unaware - and that treatment is very complex and multifaceted.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Also detail about other tick-borne infections, other stealth infections, environmental causes, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- However - every symptom you describe could also be due to severe magnesium deficiency. Now, that often goes along with lyme, however, it could possibly be just that in your case.
Get a blood test for INTRACELLULAR MAGNESIUM level. A must-read TODAY article:
Other minerals and nutrients also need to be considered.
MINNESOTA LYME ASSOCIATION -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Re: the anxiety. Can be from low magnesium. Fish oil can help.
Liver toxicity is related (especially with lyme as lyme is very toxic). Liver support is vital for all (whether lyme or not).
Many Rx are also very stressful to the liver, increasing anxiety if the liver can't work as well as it should.
Milk Thistle is the most common liver support but it can alter the levels of medication, depending upon timing, etc.
Until you see a LLMD - MAGNESIUM is the most important helper, along with
FISH OIL.
Lyme also clobbers the adrenal fight-or-flight reactions. Certain adrenal support herbs like ashwaganda and the vitamin B-5 are very helpful.
You can do some things now as you explore getting to an ILADS-educated LLMD for assessment.
If you EVER recall having had a bulls eye rash (or other kind of rash) after tick bite, that would be a key detail but not all with lyme get the rash.
AVOID FLUORESCENT LIGHTS - even the low-energy kind in home lamps - they can cause anxiety in many who are sensitive.
Use the old fashioned kind of bulbs, incandescent.
Even in your kitchen (if you have an overhead fluorescent light), do not turn it on. Get lamps for your kitchen, instead - with regular older light bulbs.
I know this is a lot to take in at once but it should offer you hope that once you get a proper doctor who knows more to assess your case, you may be in far better hands and have a good chance at recovered health.
BOOKMARK THIS THREAD for easy access to the links for your personal research.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Adrenal support.....funny...One neurologist said my tremor was from too much adrenaline...my fight or flight mechanism was too strong.
Then gave me the beta blockers to slow me down.
Can cod liver oil work?...I started that with the magnesium...plus B vitamins.
No bullseye rash...I did have a rash...they thought it was shingles...but it wasnt.
Posts: 27 | From MN | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- Forgot to mention that it is probably in your best interest to go SCENT-FREE in your home, car, work, etc. as much as possible.
Synthetic colognes can affect the neurological system, endocrine system, the liver and who knows what else.
Avoid all air "fresheners" and scents in everything you use. Get bottles out of your home as the scents will travel through the plastic.
Do not use the microwave oven for ANY plastics at all, even if designed for microwave use. Only glass or ceramic (like corningware) for the microwave. Though, best to not use it at all, really.
AVOID PLASTIC bottles, glasses, and cup. Drink only out of china, ceramic or glass -- or earthenware if you are absolutely certain it is certified to be
free of lead and mercury. If in doubt, do not use. (To my knowledge) Corningware dishes and mugs are safe until you can sort this out. But you'd want to see that verified by the company.
You should also get heavy metals testing. See Doctors Data Lab out of Michigan. It's only going to show a bit of the picture as it can't show all we'd like, though it's a start:
Doctor's Data Lab - Heavy Metal Testing -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- After all that, just wondering if perhaps the doctors who are "thinking MS" or Parkinson's have already conveyed to you the
importance of avoiding scents, food additives, plastics, dishes / cup that may contain heavy metals
and also suggested testing for heavy metals.
Did they tell you about magnesium and fish oil?
You don't have to take the time and energy to answer but I just really hope they may have. None of the MDs who thought I had MS told me any of this but they should have, even if they did not "believe" in the existence of lyme.
NDs (naturopathic doctors), though, did teach me all about other things that the MDs missed.
If your doctors at least covered some of the other stuff, that would just make me feel better. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: "Can cod liver oil work?...I started that with the magnesium...plus B vitamins." (end quote)
Yes, cod liver oil is very helpful. Good to see others on board.
Be sure to take the B vitamins with food, if a multi. The B3, niacin, can be very hard on a stomach with too little or no food.
Some individual B's are okay without food, though just not B3 (Niacin).
Some B vitamins can be very stimulating, though, so pay attention and back down or divide between breakfast and lunch (not dinner). Not too late in the date for most of them.
manybites' post about BARTONELLA is important to consider. Most good LLMDs will consider this but be sure when you call for an appointment that they will
assess all tick-borne infections. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Actually Ive seen 3 neurologists and one Parkinson's doc from the U of M. None of them mentioned natural suppliments...just the drugs they put me on. All of the drugs Im on cause drowsiness..but I barely notice...except for the muscle relaxer...which is why I sleep ok. So..I think Im all wound up...but the drugs even me out.
Also...none of the docs have given me advice except to see a physical therapist for my stiff neck. I was checked for metals...man...Ive had every blood test it seems. If I didnt have this nasty shake..tremor..they would think Im nuts...or making this stuff up.
Got the magnesium from a MS forum...cod liver oil from the wife. Anything to stop the dizziness??
Lots of knowledge here...no matter what I have....thanks!!
Posts: 27 | From MN | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- GINGER CAPSULES & B-6
can help lessen dizziness. Check the side effects listed for each Rx. Many cause dizziness and vertigo (although dizziness is a symptom of lyme, too).
Adrenal support can also help relieve dizziness.
Be sure you have some sea salt in your diet and that you are not dehydrated. Ever. First thing in the morning, drink water with a little sea salt.
Do not use regular table salt.
More detail here about GINGER and what else helps with balance:
Be VERY, VERY careful about whoever you may see for that stiff neck. It needs very tender loving care, no sudden twists or turns.
Do not let a regular chiropractor adjust it but only one who may do very gentle techiniques as used with the UPLEDGER METHOD or FELDENKRAIS TECHNIQUE.
If lyme, lyme can get much worse if the neck or spine is suddenly jolted.
For any BODY WORK, best to find someone who is ILADS-educated and Lyme Literate. When you see your LLMD, ask about any physical therapists - or massage therapists they may recommend. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Metals tests are often not sensitive enough.
Did you do a DMSA challenge and a 24-hour urine collection? Did that go to Doctor's Data Lab? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My wife just got home from work and mentioned a co-worker who is being treated by a Dr.S here in MN. They require a ton of testing before taking new patients now.... Her symptoms sound exactly what I am dealing with...exactly....Im thinking of just mirror her treatment...since it seems impossible to break through the medical system here. I will continue to look for a doctor here in the mean time...
Posts: 27 | From MN | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be sure that Dr.S is an ILADS-educated LLMD.
FIRST, find out by talking with someone at the Minnesota Lyme Association.
Most LLMD do not require a ton of testing before you see them. Most want to see YOU, hear of your symptoms and see how you talk, walk, move and think before they order specific tests.
Also be sure to refer to the "Diagnosis" thread before any lyme testing. Not all labs are adequate.
I would be careful about mirroring anyone's treatment. You are on many pharmaceuticals right now so potential interactions are to be considered.
We learn from others, sure, but each person deserves individualized treatment.
MINNESOTA LYME ASSOCIATION -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
This sounds like Lyme and co-infections HIGHLY!! This is exactly how I felt when I initially got ill. I was dizzy, VERY anxious, shaking all over, felt like I was plugged into a socket all day and night. I had x-rays, CT's/MRI's of the head for the dizziness. All the while the doctors were humoring me (running the tests to cover their butts) but finally diagnosed me as anxious, depressed and possibly the start of MS.
I knew that something was seriously wrong and I finally realized it sounded like lyme. I found an LLMD from this site and have been in treatment almost 2 years. I have come a long way. Not my normal self but am doing a lot more than when I was bedridden. I urge you to find an LLMD and get the proper tests for Lyme done.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Bb is great at mimicking diseases.
MS is caused by a retro viral protein - one that is normally within us. The myelin sheath (insulation around the nerves) is destroyed.
Parkinson's is a dopamine related problem.
Both are "autoimmune"...the body is attacking self BECAUSE the proteins (= antigens) in the offending trigger are identical to our own.
Example:
B. burgdorferi's flagellin cross-reacts with a *component of* human peripheral nerve axon, previously identified as heat shock protein 60 (HSP60).
***OUR own antibody to Bb�s flagellin (H9724)***
binds to Hsp60 within our own neuroblastoma cells.
I havent been diagnosed with anything yet...almost Dystonia..becouse of my stiff neck..but second opinion shut that door.
I am amazed how many of the symptoms I actually have for Lyme....and am just starting to re-evaluate my situation. Docs are at a loss...they just say its not a disease...dont worry...because they didnt see anything yet....except my tremor is hard to ignore...they dont want to see it...because they cant explain why I have it. Just the way you are....one neurologist told me.
Anyway...Im now looking for guidance and I may not way months for an appointment....I may start to self treat. I have taken ABX for H.Pylori...and I started to feel better all over....but it was short lived.
Thanks for helping.....
Posts: 27 | From MN | Registered: Mar 2011
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Please, please find an Lyme Literate Doctor in your area! Go to "Finding a Doctor" and post your State and general location.
Failing that: Go to www.tbdalliance.org and under the Treatment tab you will find a link to write to for an ILADs trained Lyme physician in your area. The general medical community has not been schooled in the truth about Lyme, and even your so-called "specialists" are mostly completely CLUELESS!
For a ton of information about Lyme Disease and the "treatment controversy" I suggest you watch the film "Under Our Skin."
Ive been on Propranolol for almost a year....helps my tremor.. also helps with job interviews....not nervous
Perhaps helps me get through this physical mess Im in also..sometimes I forget Im all messed up.
But combine it with this head pain and pressure...My memory is getting pretty bad..I wake up at night and dont know where I am...not cool! I just contacted a lyme doctor here....months away before I see her...the tremor is one thing I want to go away...seems Ill be disabled if it gets worse. But for now I still lift and workout..I look healthy...hide it well. Thanks for the post!!
Posts: 27 | From MN | Registered: Mar 2011
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Not sure if this combination is safe or not...
Propranolol + Berberine chloride (GlycoX 250mg TID 15 minutes before a meal)...start slowly and ramp up.
But first...
Check with a few (more than one) pharmacists for interactions.
"Treatment with CPU86017 ***OR*** propranolol reversed these changes."
"CPU86017, derived from berberine"
CPU86017 ***and*** propranolol reduced VF by suppressing these inflammatory factors in the myocardium.
ventricular fibrillation (VF) in ischaemia/reperfusion (I/R)
posted
Wow....very technical...You lost me with half of that.
What does the combo help with?
Posts: 27 | From MN | Registered: Mar 2011
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Berberine chloride is anti-spirochetal.
Bb is a spirochete.
Berberine chloride helps in many many ways.
I listed 44 ways with links on this website. Do a search.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
BGearhead:
I had a lot of your symptoms early on and was told it was "all in my head."
Fast forward 2 years into my treatment and I am nearly back to my old self. I'm mainly deailing with "residual" symptoms that are mild.
The folks here are great and have provided some good info. But it can be a bit overwhelming. So I've tried to boil it down to the critical bits of initial information I usually recommend to newbies. See below:
� First..get treated by an ILADS-trained Lyme Literate MD (LLMD.) You can find one by posting in the "Seeking a Doctor" section of this site, by contacting ILADS (www.ilads.org), or checking in with the Lyme Disease Association www.lymediseaseassociation.org/
� Second� GET EDUCATED and be your own advocate. Download and read/study Dr. Burrascano�s treatment guidelines. They are a few years old and a bit outdated, but are a great guide in helping to diagnose and understand typical treatment protocols along with symptoms of lyme and various co-infections. http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf Dr. Burrascano�s protocols have cured thousands. He is now retired, but is still an activist.
� Get tested for all co-infections, particularly Bartonella, Babesia Microti and Babesia Duncani (WA-1). Given your tremors, anxiety, etc, I bet you likely have Bartonella along with Lyme. Babesia is likely also.
� Watch the 2009 oscar-nominated documentary film about Lyme called �Under Our Skin.� Available for free on Hulu and Netflix. For pay on iTunes and available from most on-demand cable systems. This is a MUST SEE. See dozens of patients going through treatments, interviews with top LLMD�s, and interviews with the mainstream medical folks (the bad guys.) It also explains why the disease is so controversial. You should also be able to get it from your Library.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i couldnt read everything but i hope you figure out a way to get to a real llmd
neg lyme test does not mean you dont have lyme
good luck
cure unknown is what i reccomend to newbies
bcbs other suggestions are great
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Hey there! I wanted to let you know that I had every symptom you have, including the tremor (except mine was to a lesser degree). My doctors thought MS, Dystonia, Lupus and even at one point ALS. Interesting that now you are also getting muscle twitches...it was not my most painful symptom but one of my most emotionally disturbing, at least to me. I even read your other responses and just kept ticking them off in my head...yep, yep, yep. If I were a betting gal I'd say Lyme and coinfections. I hope you get some relief through an LLMD.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Oh..and I had to also say that I tested negative multiple times on WB and Elisa tests. Later to find out I was actually CDC+ through Igenex testing. Same with my oldest daughter and youngest son.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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I have an appointment in October...sounds like this doctor doesnt believe much in tests..too unreliable..will see.
Say...how does a family of five all get Lyme? Ive been reading a lot of people here treating their family...like its contagious or something. Am I missing something?...as I rub my numb burning head.
Posts: 27 | From MN | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: How does a family of five all get Lyme?
The same way one person does - either through a bite from infected tick, mosquito or flea (possibly); through birth;
or (possibly, perhaps, maybe, some say so, some say not) through intimate contact (more likely if blood is exchanged - i.e. bleeding gums, etc.)
though it's more likely from bite of an infected vector or passed through birth.
Think about it, though, the exact same natural environment exists for the entire family. The yard, a pet, places they play, etc.
Still, for anyone in any degree of intimacy with another, this conversation is important. Some LLMDs treat both of those in a couple. Some don't. I would certainly consider that but
for certain - the other person in any relationship has the right to know the various thoughts on this matter and decide for herself or himself.
But some LLMDs say that if only one of the two are treated and the other one has it, treatment can be basically wasted if it's passed back and forth. So, were it to be myself in a relationship, I'd sure want this to be considered.
Now, it may be that if the partner is asymptomatic, then an herbal approach may be just fine for peace of mind.
But being asymptomatic might not mean that it could not be passed along. Could be - or not. As long as there is that possibility, I would take precautions.
Candida can be passed by kissing and other intimate contact. Treating both for candida is important. Anyone taking antibiotics (abx) must be treated for candida -- best if done before the abx are even started.
Probiotics to begin. From there certain herbs /& or Rx. (Only brand) Seagate Olive Leaf Extract ranks highest on my list. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
MMmm....strange then..My wife has been slowly getting on symptom after another following me. Ive always thought.....no way!!...how could you get my weird symptoms! I was thinking I had something like MS or Parkinsons...or even just an injury....didnt know.
Might have to think about this more...
Posts: 27 | From MN | Registered: Mar 2011
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Yep. My oldest had a known tick bite and a horrible all over body rash (but not an EM rash) so she probably got hers from a tick. But my other two had no known tick bites. My youngest had developmental delay and then learning/behavior problems. I did not realize he was even sick until after I was diagnosed. He had "adhd" and was dyslexic. And had severe sensitivities to sound and touch. He was CDC+ and so was my oldest and myself. My husband did not get any symptoms until we had been married nearly 10 years. He and our middle child had positive bands but not enough to be CDC+ so they were clinically diagnosed based on symptoms. My LLMD is absolutely convinced that two of my children and my husband contracted Lyme through me...through pregnancy and with my hubby through sexual intercourse.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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