posted
Where do I start 1st post and extremely scared...
I'm a 31 year old male with 3 positive Lyme tests going back to last year. I live in a highly endemic area (ma) where this is everywhere.
Starting with getting sick in 2001 until currently I have had 95% of symptoms on the Lyme list.
Fast forward have seen a LLMD Nuero who was very comprehensive ct, mri, ekg, nerve conduction study, spect, spinal tap, cognitive test plus in office exams all came back negative. After 3 months of Doxy my cognitive test went up from 90 to 129. CD57 is a 60 and b12 was low at this time
I question her multiple times specifically about Parkinson's because constant shaking/tremor in hands and being rigid but she says no she thinks Lyme I causing my problems. Refers me to another LLMD who can treat me long term.
Currently for the last 5 weeks am on all oral 1000mg of Biaxin 2x day, bactrim 2x a day flagyl 2x a day and some yeast medicine taken orally. Also on a prescription b vitamin as my B2 and B6 are extremely low.
Not sure what to do from here I'm having extremely extradited symptoms as of the last week and my anxiety is through the rough. I cannot stop looking on the web and diagnosing my self with Parkinson's as some of the symptoms match up. Can anybody help me with information or similar situations? Was I too late in catching this or is there still hope I can make some recovery? Could this be Lyme only?
Posts: 16 | From MA | Registered: Feb 2009
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posted
YES, IT COULD BE LYME ONLY!!! happens all the time.
Does your hand shake without your knowing it? Then it could be Parkinson's. HOWEVER, my dad had Parkinson's and I think he really had Lyme. MAYBE the Lyme caused the Parkinson's...but I wonder if he ever had P at all.
You are on high dosages of abx which are probably making your symptoms go nuts.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Many people are misdiagnosed with Parkinsons when they actually have LD. LD can manifest itself as Parkinsons.
If you have positive Lyme test that is your answer right there. Many of us with Lyme do not get so lucky as to test positive. Many people with LD will test negative even though they do indeed have Lyme.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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bettyg
Unregistered
posted
welcome to the board!!
i have chronic lyme; had my hubby tested too from IGENEX and he had some positives but my beginner llmd said he did NOT have lyme!!
BUT he's had tremors for years; moderate ones; then 6 yrs. ago they got worse, and i got him to neurologist; ESSENTIAL TREMORS ... didn't effect his gait, etc.
now advance last 2 yrs; he now has PARKINSON'S with his 24/7 ROLLING HAND TREMORS that don't stop unless he is 100% relaxed sleeping.
he now has gait problems; FREEZING up while walking, and falling.
we'll help you.
suggest you get a western blot igm and igg blood test drawn and sent to igenex, calif. read all my detailed info in newbie package link below and found under IGENEX in table of contents.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING. delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I have a brother-n-law diagnosed at age 29
With "Post Traumatic Parkinsons".
He saw the Premier Movement Disorder Doc in the country (Houston, Tx)
He told my brother-n-law to stop "faking" his parkinson's for attention.
Didn't know I had Lyme then.
After diagnoses I remembered my brother-n-laws issues.
He was an avid deer hunter here in La. and other places in the US for years.
Hundreds of ticks on him during these years.
He so reminded myself of me.
I did have very fine tremors and still get them occasionally.
I do not have Parkinson's disease.
Part of this (Lyme) disease process is the questioning of other
Possible Miss-diagnosis.
I've thought brain tumor for myself.
It is part of this disease.
We all go through it.
Yes, this could be Lyme only.
I've been in treatment for over 29 months.
Anxiety is often associated with bartonella.
A co-infection.
Give treatment some time.
Make sure you are under the care of a Lyme Literate Medical Doctor.
I am much, much better now than I was prior to treatment.
Even working again.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Yes, this could be Lyme only or Lyme plus coinfections. Very unusual to only have Lyme and not have one of the coinfections.
Hubby has been sick 8 years. 2 years undiagnosed and 6 years in treatment. His first symptoms were Parkinsonian tremor and nausea/vomiting/dry heaves.
It has been a long road, but his tremors are virtually gone. He has spells where they act up now and then, but considering that he used to shake pretty much 24 hours of the day (the bed would shake and wake me up and he would still be sleeping) -- he has come a long long way.
And, yes hubby has had plenty of problems with muscle rigidity as well. That symptom gradually got worse and worse over the years, but is almost gone as well. He was even tested for Stiff-Man Disease at one point.
In my opinion there are a few nutritional supplements that could help with the tremors, but they are somewhat expensive.
CoQ10 at very high doses -- 300 or 400 mg of the ubiquinol form could help. Also phosphatidylcholine -- at least 1 tablespoon daily -- best brand is from the site below. Lecithin is cheaper and might help.
The other thing I would suggest is Resveratrol -- this will help you use those B vitamins better. Discussed in the Healing Lyme book. This could also help with the anxiety.
You might also want to add extra folic acid (folinic acid is an activated form that might be better absorbed) because the Bactrim can deplete folic acid.
Very important to rule out coinfections. At least 2 Lyme docs have told hubby that Lyme or Babesia or Bartonella could cause these Parkinsons's type symptoms. In hubby's case it seems like either Babesia or bartonella are more likely the cause of his tremors, myoclonus, seizure-like episodes.
Good luck and please keep posting to let us know how you are doing.
Bea Seibert
Hubby was 45 when he got sick, so you are much younger and have an even better chance to beat this. Also, hubby had prior mercury toxicity which also caused a Parkinsonian tremor so that was another strike against him.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Most Lymies who have taken the Allergie Immun test are allergic (DNA) to soy (as well as to wheat/gliadin and some major heavy metals plus many many industrial chemicals). So anything containing the soy frequency is counter-productive because the body does not utilize it or goes into stress mode with it.
My husband with parkinsonism symptoms having used CoQ10 in extremely high doses for many months did not gain a thing. Today I know why. He is highly allergic to it, at the DNA level, and anything made of soy, some hormones, cholines, etc. etc. If you add the wheat/gliadin and metal allergies (most Lymies tested positive for all), the list is endless.
It pays to be aware of this, especially with a neurological problem.
All that makes for a huge missing link until the allergies and energetic dysregulations are corrected.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Untreated lyme caused my hand and head tremors. Now almost completely gone (I'd say 95% gone most days) after treatment for lyme and babesia!
If you have been on oral biaxin and flagyl, the anxiety and increased symptoms you are feeling now may be herxing. Hope you feel better soon.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Wow - Thanks for all the info regarding my situation. This has been extremely frustrating and scary for both me and my wife.
Betty G- I have already had an IGENEX positive IGM and multiple bands IGG think 3 with a couple IND. Came up no on all co infections but I know Igenex misses these as there hard to test for. Was also tested for wheat and that's not and issue
Like I mentioned with the Parkinson's symptoms there are many other that go along with Lyme 90% of the symptom list. Tremor is more pronounced in my left hand arm but also slightly in my right- head not really involved. My gait is fine and also my arm swing has not been affected. The one other thing that has been bothersome is my speech/word find and 3 syllable/rolling words are difficult.
My entire family has Lyme and co- infections- brother has had multiple positive Bartonella test.
Should I seek out a regular Nuero for another opinion? Could my Low Vitamin B2 & B6 be causing these issues? I have a very hard time believing them as many told me I was crazy its depression but it's definitely not Lyme. I know the aggressive treatment has only been in full swing a month or so, so I'm still praying
Posts: 16 | From MA | Registered: Feb 2009
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posted
Who are these "many" who have told you that you are crazy and it's depression & that "it's definitely not Lyme"?
You have 90% of the lyme symptom list going on.
The likelihood that you have multiple diseases and syndromes causing each/several of the symptoms separately is highly unlikely.
The likelihood of have one root cause-- Tick-borne diseases--- is much greater and more Logical.
From what I've heard, Vit Bs deficiency and pernicious anemia can contribute to the neuro symptoms.
I have both those deficiencies and then some
---from Lyme.
Had a picture-perfect panel in every respect before TBDs.
If you are going to the Neuro-lyme doctor I think you are, you are in very good hands with her. She is methodical and thoughtful.
A neurologist who isn't lyme-savvy wouldn't know what to do or could very well commit you to a diagnosis of progressive deterioration or conversion disorder. Yes, despite positive WBs.
Of course, get a 2nd opinion if you feel you need to but be wary that it could easily add to frustration and confusion.
Btw: Flagyl is one heck of a med and many cannot handle it. It even causes psychiatric sort of episodes.
Good luck---keep us abreast of your situation.
Edit: LymeToo provided a link to a post re: Under Our Skin. If you haven't seen it, I'd suggest you do. Have a box of kleenex handy though. Many have had the misdiagnosis of Parkinsons, MS, ALS before Lyme.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hi there--
Have you checked your calcium levels? If you're hypocalcemic, it can cause symptoms known as Parkinsonism....which is highly treatable....I seem to recall if you Google Cleveland Clinic and Hypocalcemia it has some info on this....I have no reason to believe your symptoms aren't lyme related....just trying to give you another avenue to explore....So sorry you're suffering...
Posts: 1155 | From Southeast | Registered: Oct 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Parkinsonism definitely does not have a single cause. It has many. Lyme Disease is not caused by Lyme bacteria alone. I have met many with these symptoms through my association with Dr. K. and not a single one could get well by addressing the Lyme infections only.
I have talked at length about this in my many posts. Knowing how you feel, please do read some of them.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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