Lyme, too?

[Lotus97]

I found this from a Lyme doctor about neurological symptoms. I don't have very many neurological symptoms, but I did have severe depression and insomnia within a year or two of being bitten. Also lightheadedness and diziness.

Neurological symptoms associated with Lyme disease are all over the map. They do include tremors, fasciculations, weakness, myoclonus, Parkinsonian features, MS features, ALS features, vertigo, dizziness, alterations in hearing- vision- sense of smell or taste, neurologically mediated stiffness, sleep disorders including sleep apnea, loss of balance, all manner of speech disturbances and psychiatric disorders as listed elsewhere, stiff neck of the meningitis variety, neurologically mediated changes in bowel and bladder function, pinched nerve syndromes, neurologically mediated pain syndromes of all sorts, trouble swallowing mediated by changes in the brain, stroke like symptoms, a wide variety of neuropathic symptoms not listed here, changes in heat and cold perception, HEADACHES, exacerbations of preexisting migraine or tension headache, ADD syndromes, personality changes, neuromuscular syndromes causing muscle atrophy and weakness--AND these are just a few of the symptoms that come to mind as I sit at my desk on my lunch break. My point is that any one symptoms can be taken out of context. There is a gestalt in diagnosing Lyme disease. Patients have multiple and varied symptoms which come together a whole.

Perhaps sometimes I write Blogs to encourage my readers to think- and to some extent, I am sharing my thoughts, as I think out loud. I hope that readers will understand my comment in this light.

Neck pain is extremely common in Lyme patients. AND it does suggest co-infection with Babesia. I have a general medical practice. One half the patients I see do not have Lyme disease. The vast majority of patients who complain of neck pain as their chief complaint do not have Lyme disease. Please understand this distinction.

If all horses are brown and you are brown it doesn't make you a horse.
This sound silly, but I think it was this sort of logic that brought the above described patients to my office for a consultation.

 

[Lou]

Thanks to all of you who responded. There's a lot of information already gathered in this one thread and I appreciate it very much.

Perhaps it will help someone here if I give a brief description of what happened to me last summer. Please keep in mind I haven't been properly diagnosed and according to maps showing prevalence of Lyme I live where it is quite uncommon. That being said, I circled 48 of the 75 symptoms listed by GcMaf Australia.

I became ill with me/cfs in 1984 while living in Lake Tahoe. In years since went from 'living dead' to operating my own small business, probably 7 on scale of 10. One evening after work last summer I sat down on the deck to relax with a cup of coffee and absent mindedly scratched at a small raised red bite at the base of my right thumb. There was a tiny bit of blood and all hell broke out with the itching, like a mosquito bite on steroids. I've since figured my immune system was gathered like an army around this invader and when I scratched at it a battle royale ensued. Incident was soon forgotten.

Then days, or maybe even weeks later, I woke up feeling awful, even a tee shirt collar touching my neck was uncomfortable. My neck was stiff like crazy, back somewhat, too, lymph nodes swollen, eyes red, and I began to have night sweats again (long since had gotten over them with me/cfs). Many other symptoms came on about this time. I went to my doctor to try and rule out serious stuff like cancer. After many tests and x-rays he came up with a lumbar problem caused by sleeping improperly on two pillows. Thanks, Doc.

Later, I got tested for West Nile Fever. It was negative. So finally I begin to read about Lyme, and it does seem to explain these symptoms that just won't go away.

This is hardly living, again, though I still go about my day much as before. So, if it's Lyme, I'm ready to fight it just as was (is) the case with me/cfs. I'm ready to feel better again.

Thanks again, friends, for the help.

 

[Allyson]

Lou that red bite sounds like something indeed.

There is a good American mainstream movie about a guy with Lyme disease.

I cannot think of the name ATM; I saw it about 2-3 years ago on dvd - so i saw it about 2010 and it was not that old then.

Hopefully someone may recall the title for us or i will search as I would not mind re- watching it.

Best,

Ally

 

[ukxmrv]

Hi Lou,

If you got sick whilst living in Lake Tahoe have you considered getting in touch with other Tahoe survivors like Erik (who posts on mould and his own experiences in that area) or with Dr Cheney or Peterson to see what thoughts they have about the original cluster of disease there?

Just as an aside - I hate those lists of symptoms because they remind me of the Candida ones I saw in the 80's that blamed just about everything on Candida. So many of these lists for different conditions are the same. We could all score highly on them.

 

[Allyson]

Just as an aside - I hate those lists of symptoms because they remind me of the Candida ones I saw in the 80's that blamed just about everything on Candida. So many of these lists for different conditions are the same. We could all score highly on them.

I was kinda thinking that too X, but where do you start? what alernative is there?
And a lot of illnesses have te same symptoms and when there are a lot of them you get a lot of ovellap .....

A problem.

I suppose the symptoms are not diagnostic and at least there are blood tests for Lyme.

best

Ally

 

[GcMAF Australia]

Hi Lou,

If you got sick whilst living in Lake Tahoe have you considered getting in touch with other Tahoe survivors like Erik (who posts on mould and his own experiences in that area) or with Dr Cheney or Peterson to see what thoughts they have about the original cluster of disease there?

Just as an aside - I hate those lists of symptoms because they remind me of the Candida ones I saw in the 80's that blamed just about everything on Candida. So many of these lists for different conditions are the same. We could all score highly on them.

I think that is the point
there are co infections
eg candida often occurs with Lyme
it gets a diagnosis and people can get down to treatment
the trick is to get the treatments right

 

[Lou]

Hi Lou,

If you got sick whilst living in Lake Tahoe have you considered getting in touch with other Tahoe survivors like Erik (who posts on mould and his own experiences in that area) or with Dr Cheney or Peterson to see what thoughts they have about the original cluster of disease there?

Just as an aside - I hate those lists of symptoms because they remind me of the Candida ones I saw in the 80's that blamed just about everything on Candida. So many of these lists for different conditions are the same. We could all score highly on them.

Actually, I started a thread here about a year ago trying to locate others that became ill in Tahoe. Not much came of it, no fellow Tahoe responders, only a few interested in my take on what happened there-- which was, I don't know.

I also emailed Dr. Cheney's office relating though I didn't know about him at the time of me/cfs onset, that I was one of those that became ill there. He apparently wasn't that interested as I never heard back from him.

I somewhat agree with you regarding symptoms list, however there were a few new ones --never had with me/cfs-- that came on suddenly last summer and they were all listed on the Lyme symptoms.

 

[JT1024]

This is an interesting link:

http://www.betterhealthguy.com/klinghardt-lyme-cocktail

 

[Allyson]

.

I somewhat agree with you regarding symptoms list, however there were a few new ones --never had with me/cfs-- that came on suddenly last summer and they were all listed on the Lyme symptoms.

Hi Lou, do you recall wht the new symptoms were please?

thanks
Ally

 

[Lou]

Hi Lou, do you recall wht the new symptoms were please?

thanks
Ally

Hi Ally,

Hmm, thinking about it, most of them aren't brand new, but had almost completely disappeared after about fifteen years of me/cfs. The 'new' ones refer mostly to the intensity, frequency and degree of symptoms that came on suddenly last summer:

night sweats
swollen glands
sore throat, hoarseness, having to clear throat
blood shot eyes at the beginning (now gone)
stiff neck (much worse than experienced younger with onset of me/cfs)
blurry vision
fevers
memory problems (right now it would be impossible for me to tell you what I wore yesterday)
Those are the most prominent ones.

An absolutely new one is with the ears and hearing, constantly feels plugged up as you also described.

Then there's this, too. A vague memory of small bull's eye target at site of bite on lower thumb, but it's gone now, and I've already mentioned my memory problem, just not sure that even occurred.

 

[GcMAF Australia]

Ok here is another list
http://www.lyme-symptoms.com/LymeCoinfectionChart.html

 

[valentinelynx]

I just finished reading "Cure Unknown" by Pamela Weintraub about Lyme disease. She is a science writer whose entire family was affected. She has the ability to parse scientific studies. I was blown away by her findings. I was previously of the "be very skeptical of Lyme disease" school as well. There are, indeed, some really dangerous and wacky "medical" practitioners out there to take advantage of the desperate patients (true in ME/CFS, as well), but I really had no idea the "accepted" science of Lyme disease was so flawed. It almost makes the ME/CFS world look straightforward! The CDC has played its role much like it did with CFS as well. I strongly recommend this book to anyone who wants to learn about the background behind the Lyme controversy.

One thing truly ironic about this: the Lyme nay-sayers like to say, "those people don't have Lyme disease; they have CFS or FMS" like suddenly these are the conservative, well-acceptied diagnoses!

 

[GcMAF Australia]

we have our own controversy here
and the truth will come out about gross mismanagement and legal/medical liabilities

 

[kolowesi]

This is an interesting link:

http://www.betterhealthguy.com/klinghardt-lyme-cocktail

This is so interesting! Thank you!

I will have to think on it. Most things I can take, a few I already take, and some I am unfamiliar with. Love the liposomal technique using an ultrasonic jewelry cleaner.

Just was watching bulletproof executive Dave Asprey pointg out that antibiotics are mycotoxins. I'm on the last two that work for me, so this gives me some options. Thanks again!

 

[JT1024]

I wish I could interact in the various online forums but I have little time when I can. I love hearing what others have experienced and read.

I just found a website where Dr. Klinghardt shares a lot of info here: http://www.klinghardtacademy.com/Protocols/

So much information, so little time.

 

[ukxmrv]

I was kinda thinking that too X, but where do you start? what alernative is there?
And a lot of illnesses have te same symptoms and when there are a lot of them you get a lot of ovellap .....

A problem.

I suppose the symptoms are not diagnostic and at least there are blood tests for Lyme.

best

Ally

I start off with things like recognised diagnostic criteria and tests (if I can).

Ignore the lists as so many of them are the same. Learned from the "candida" claims of the 80's that these lists can be a waste of time, energy and money.

 

[taniaaust1]

Ah yes thanks Lotus it was GcMAF Australia i meant to tag. He might be kind enought ot re-post them for us or give us the thread link.


I don t recall a bite or a rash but most bite will give me big raised red lumps - esp spiders - so who knows?

So will cover all my bases .. what else can I do? Not a lot actually.

Incidentally for anyone in Austrlia - i posted somewere that testing for MTHFkR gene is free here if you have a history of DVT or PE but the pathology company has phoned me to say that is not the case...... they told me that in error - test costs 45 dollars ATM


ALly

v

What!! Ally my MTHFR testing was done free thou I didnt have a history of any of those things but I know this year they've changed a lot of the medical stuff and have introduced a hole lot of new rules (including a stupid rule that if you get over so many blood tests done at once, you then have to pay for all the rest). So now my specialists need to take a lot of care how many tests they order for me when there is a lot of health issues I have which need monitoring..

There is some new stupid rule here which I struck a couple of days back, when trying to get my prescription anti-nausea drugs.. apparently now if I get them for the cheap rate my disability pension allows me to get them at,, you loose all the repeats. You can only keep the prescription repeats if you pay more money!! and if you pay the more money so you can keep the repeats so you dont have to go back to dr for another prescription.. you cant included that money on that scheme of if your meds go above a certain amount you get them free.
All the new rules they have brought in this year suck!!.

We also lost the dental health plan for those who have chronic illness towards end of last year (that used to allow me to see the closest dentist to have my teeth done even 6mths for my teeth issues this illness has caused, now I need to travel further afield to one of the gov clinics which have huge waiting lists and I'm going to end up with huge holes if I go throu there and I cant get places not close to me anyway).

 

[taniaaust1]

I start off with things like recognised diagnostic criteria and tests (if I can).

Ignore the lists as so many of them are the same. Learned from the "candida" claims of the 80's that these lists can be a waste of time, energy and money.

I tihnk like ukxmrv.. the lists are untrustworthy as there are so many other illnesses (many of them rare) which have so much overlap or even the same symptoms. There is currently FOUR different illnesses I know of (there would be more then that), which could explain all my symptoms.. mitochronidral disease maybe in my family, systemic mastocytosis (mast cell disease) IS in my family and I also fit ME and fit a disease pattern of it as Dr Cheney describes (Ive nearly every single symptom on the lyme list except a handful but as my symptoms also match those other things too.. well who knows what I have.. all those things are hard to get ruled out).

Its like playing russian roulette to guess what we may have.

Ive found a lyme literate doctor who is willing to treat me for lyme as she believes I have lyme (I could be a poster child for lyme cause of how well I fit the lyme symptom list and yes I have been exposed to ticks and fleas and bad cat bite so probably have more then just lyme) but I dont want lyme treatment unless I have more then just matching all those symptoms as I know I also do match more illnesses then this. I used to have chronic candida issues and dont want to go back into that due to taking antibiotics I may not even need.

If my lyme test dont come back positve.. Im going to have to try to save up for the very expensive lyme test which isnt reliant on antibiodies (ive had issue with producing antibodies to vaccines so have thoughts my current lyme test will probably come back neg).

 

[taniaaust1]

Hi Lou,

If you got sick whilst living in Lake Tahoe have you considered getting in touch with other Tahoe survivors like Erik (who posts on mould and his own experiences in that area) or with Dr Cheney or Peterson to see what thoughts they have about the original cluster of disease there?

Just as an aside - I hate those lists of symptoms because they remind me of the Candida ones I saw in the 80's that blamed just about everything on Candida. So many of these lists for different conditions are the same. We could all score highly on them.

You also get high symptom lists for food issues or things like Celiac disease too and of cause that causes neurological issues etc etc and weakens the whole body. 10% of Celiacs get a negative test result as those tests arent reliable either. I have heaps of severe celiac disease in my family so this is another thing I often wonder if I have. Hyperinsulinemia also can cause a lot of symptoms (it even was giving me sore throats, insomina, more tiredness in the morning, mood swings and GERD).. my specialist calls insulin resistance as the pandoras box of illnesses as it can cause so many different symptoms.

 

[Allyson]

You also get high symptom lists for food issues or things like Celiac disease too and of cause that causes neurological issues etc etc and weakens the whole body. 10% of Celiacs get a negative test result as those tests arent reliable either. I have heaps of severe celiac disease in my family so this is another thing I often wonder if I have. Hyperinsulinemia also can cause a lot of symptoms (it even was giving me sore throats, insomina, more tiredness in the morning, mood swings and GERD).. my specialist calls insulin resistance as the pandoras box of illnesses as it can cause so many different symptoms.

tans ther eis now a simple gentic blood test for coeliac - not the initial one that gives false neagtives - a GENE test

I had it done free atthe Royal Melbourne Hospital coeliac clinic which is excellent

they take a history and then do this test and it savesyou having a biopsy
It showed there was 99.8 percen t cchance i did NOT have the coeliac gene wheich was a good as a no for me - and this confirmed what the doc - Dr Jason Tye- Din thought about me.

He is also now trialling a vaccine against coeliac.

RMH and Walter and Eliza Hall Institiute doing it together - great work guys !!!

Aussie Aussie Aussie ! lol