Lyme and ME

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Lyme and ME

Postby AlmostClever » Fri Sep 09, 2011 1:31 pm

A long read but short compared to my MS journey -

My background:

I was diagnosed with MS about 6 yrs ago (age 35) when I went to the doctor with a tingling sensation in my right big toe. A spinal tap was performed to confirm the MS diagnosis.

I started on Rebif and developed a resistance after 1 yr. I then did copaxone for about 2 yrs. I mixed in all kinds of supplements and even LDN along the way. Tried diets, too. Progression continued.

When CCSVI came onto the stage, I rushed to get dx’ed. I had procedures done by the most experienced doctors in New York ad California. We all know who they are

I found another doctor in Texas to treat my May-Thurner and place a stent in one of my jugulars, which had shrunk to a diameter of 2 mm. (This is a minimum of 1 cm in most people.)

Along the way, through all these drugs and procedures, I experienced some improvements but an overall decline in my disability. Since it seemed as though I had exhausted the simpler , less damaging options and seeing no halt to my disability progression, it was time to move on.

I asked my MS specialist what I should consider next. The suggestion was Rituxan. I wasn’t crazy about this due to the possibility of getting PML by re-activating (or un-cuffi ng) the JC virus, which I was told the majority of the population (92%) actually has. (This percentage was told to me over the phone by the good folks at Baylor C of M who were going to test me beforehand for the virus.)

I decided to explore other avenues.

I began by getting my thyroid checked. After all, my mom and 2 sisters all had issues. Everything looked fine with mine, though.

And then one afternoon I was going through Netflix and came across Under Our Skin, a documentary about Lyme. I remembered seeing threads on this forum about Lyme disease but never really read them through. So, what the hell – I might as well watch this documentary. It got interesting and made some sense to me. After all, I remembered getting bit by a tick (in Texas) and developing a rash about 15 years ago. So I went to my PCP and demanded a Western-Blot Lyme test.

The results came back. They told me I was negative for Lyme over the phone.

I just happened to go with my wife one day to the doctor’s office (we use the same doctor) so I asked for printouts of all my labs. I looked at the Western Blot and noticed that one of my antibody bands out of about 20 came back positive (Igm 23). My doctor told me that the CDC didn’t consider this a positive test for Lyme so there was nothing they could do for me.

So I tracked down a LLMD (lyme-literate md). She heard my case and ordered more blood work to test for co-infections of Lyme, another Western Blot, and a test called CD-57. She put me on some antibiotics and told me to come back in 3 weeks.

I met again with her today. None of the tests for co-infections came back positive. The same band (Igm 23) popped up again but no others. The interesting result was from the CD-57 test. For those who don’t know what it is, basically it measures the activity level of Lyme disease in your body. Here are a couple of links that will explain better:

http://www.truthaboutlymedisease.com/ph ... p?f=6&t=10
http://www.healthcentersofamerica.com/i ... cfm?id=144

My CD-57 level was 16! That is chronic lyme according to the chart.

My LLMD explained to me about other things that can cause low CD-57 levels but between her and me, I HAVE LYME! Unfortunately the CDC says different until I have more bands show on the Western-Blot!

So she doubled my abx dosage and we’ll retest again in 2 weeks. She seems confident we will eventually get the CDC dx by forcing more bands to show! (Texas just passed a new Lyme bill that I believe will allow doctors to try this for an extended period of time – it’s amazing what happens when a congressman gets Lyme and goes through it himself!)

She has treated hundreds, if not thousands, of Lyme cases and knows exactly what to do. Over 30 years of experience, too!

So, I believe I have finally found the cause of my illness! What a different life I would have had if my initial doctor would have known about chronic Lyme and tested and treated me 6 years ago! I feel robbed and somewhat angry to say the least!

All the pieces in my puzzle are now starting to fit together – from my tick-bitten leg being the first to show symptoms to my vascular issues (Lyme causes vasculitis)- it all makes sense!

Now I have a lot of hope again! Maybe I can halt my progression or even turn it around! Time will tell...

Please do yourselves a favor. Find a LLMD to get these tests – Western Blot,co-infections, CD-57. If for no other reason than to rule Lyme completely out!

Good Luck and God Bless!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Re: Lyme and ME

Postby fee001 » Sat Sep 10, 2011 4:20 am

Hi!


I believe it is.I am like you persistant, I 'aint going to sit down and shut up, no way I've come too far. 10 years of my life has been written off. It stops now. My Dad was a D.I.Y.er yeah he taught me that something doesnt work for a reason, I have found my reason and now I can go ahead and get it fixed.

By the way talking of angry, do you find yourself saying "I have never hurt anyone in my life, why has someone caused me this" I say it all the time.

Its not the Doctors fault nor the Neurologists, its those at the very top, now they have a lot to answer for, as they dictate to those below how to behave and tow the line. Now they are accountable. and when I walk and only when can I prove anything, but when I do I will shout so load you will hear me over there.

It may not be today, it may not be tomorrow, but some day soon.


Fiona
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Re: Lyme and ME

Postby mrbarlow » Mon Sep 12, 2011 1:10 pm

Emailed my Doc today who has agreed to go ahead with a Lymes Test as much of my adult life has been spent in areas with deer and documented Lymes cases. The sample goes off to the USA (from the Middle East) and the result should come in about 2.5 weeks.
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Re: Lyme and ME

Postby fee001 » Mon Sep 12, 2011 1:19 pm

mrbarlow,

Excellent!


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Re: Lyme and ME

Postby mrbarlow » Mon Sep 12, 2011 2:35 pm

fee001 wrote:mrbarlow,

Excellent!


Fiona



He is an American and such a breath of fresh air compared to the asshole UK Docs I have had over the years. You can have a conversation about treatment / ideas about treatment without being patronised and spoken to in a dismissive condescending manner. I am not that keen on my job here and the biggest fear I have is going back to the UK and facing the No Hope Service crap I had for 38 years. :-x
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Re: Lyme and ME

Postby AlmostClever » Tue Sep 13, 2011 5:02 am

mrbarlow wrote:
fee001 wrote:mrbarlow,

Excellent!


Fiona



He is an American and such a breath of fresh air compared to the asshole UK Docs I have had over the years. You can have a conversation about treatment / ideas about treatment without being patronised and spoken to in a dismissive condescending manner. I am not that keen on my job here and the biggest fear I have is going back to the UK and facing the No Hope Service crap I had for 38 years. :-x


mrbarlow,

Glad to hear you are at least checking Lyme out! At least you will know if you can rule it out or not.

1) See if you can get a CD-57 NK test (low score indicates Lyme infection - mine was 16/chronic Lyme)
2) You must get a copy of your Western-Blot to see if any bands were present. You may not be told this over the phone. Some bands carry more significance than others as they respond specifically to Lyme only. Mine was band Igm 23 which is specific to Lyme. Igenex (in CA) is the best lab for Lyme but mine were done by Quest and Labcorp, which both detected my Igm 23.

If you have a band present,your treating doctor may decide to begin abx treatment which over time may cause more bands to show, which will allow a dx to be made. If you have had Lyme for a long time, your body may not be producing Lyme antibodies anymore.

If you do believe you might have Lyme, you should be able to find a LLMD in Europe. (I don't know exactly where you are!) You can go onto a Lyme forum and request info. These doctors do not advertise their services here in the U.S. because of the controversy surrounding chronic Lyme disease - the CDC says it doesn't exist!

And unfortunately, the UK does not hold a monopoly on a-hole doctors! There are plenty everywhere but keep looking until you find an open-minded one like you did!

Good Luck!

(I am not trying to turn this forum into a Lyme forum. There are plenty of those already on the internet! I am only trying to help spread the word to those who may have been misdiagnosed with MS. I encourage everyone who hasn't to get Lyme ruled out before moving on to more radical treatment. I, myself, do not have a formal CDC lyme diagnosis - yet!)
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Re: Lyme and ME

Postby mrbarlow » Tue Sep 13, 2011 10:46 am

HI Almost Clever

I believe the blood sample goes to the Mayo Clinic - I assume in the USA. My Doc is pretty good at discussing medical issues accepting that sometimes the patient knows more about their specific illness.

Cheers

MB
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Re: Lyme and ME

Postby AlmostClever » Fri Oct 07, 2011 11:25 am

I was officially dx'ed with Lyme today!

Increase in CD-57 score and new Igm band showed up after starting antibiotics! Good enough for the CDC and insurance!

PICC line goes in Monday and start IV abx!

OFFICIALLY MISDIAGNOSED WITH MS!!! HELL YA!!

FIND AN LLMD!!! GET TESTED FOLKS! IT'S MORE COMMON THAN YOU THINK!!

My LLMD here in Houston sees about 40 Lyme patients PER DAY!! So you really think Lyme only happens in the Northeast?!?!

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Re: Lyme and ME

Postby mrbarlow » Fri Oct 07, 2011 12:47 pm

I should get my test result tomorrow.

Its kinda of weird isn't it - a test for a nasty bacterial disease and if it is positive that's good news!
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Re: Lyme and ME

Postby mrbarlow » Mon Oct 10, 2011 7:18 am

Got my result today - negative :sad:

On the plus side at least the 1o months of interferon have been working for me not against.
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Re: Lyme and ME

Postby bartman » Mon Oct 10, 2011 6:46 pm

MrBarlow,
Having done 10 months of interferon will make it way more difficult to get a positive blood test for lyme. Interferon interferes with your blood making it harder to make antibodies. A NEGATIVE Lyme test does not mean you don't have lyme. What test did you have done? Both the Elisa, and Western Blot are unreliable. These test miss 50-70 %. It seems Almostclever took the lyme test while an antibiotics, essentially stirring up the infection so that it comes out and the test picked it up. The best way to find out if you have lyme is to treat it with a lyme doctor. Look into Minocycline + Copaxone, this is the best most effective med for MS and coincidentally, it will cover lyme at the same time. You really need to understand that Lyme is a clinical diagnosis and the testing is so unreliable it's worthless, especially when you suppress your immune system like you are doing with interferon. The best way to tell is to treat and examine the reactions to the antibiotics. Just needed to add this, don't give up. Did you get tested for CPN also?
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Re: Lyme and ME

Postby mrbarlow » Tue Oct 11, 2011 12:29 am

bartman wrote:MrBarlow,
Having done 10 months of interferon will make it way more difficult to get a positive blood test for lyme. Interferon interferes with your blood making it harder to make antibodies. A NEGATIVE Lyme test does not mean you don't have lyme. What test did you have done? Both the Elisa, and Western Blot are unreliable. These test miss 50-70 %. It seems Almostclever took the lyme test while an antibiotics, essentially stirring up the infection so that it comes out and the test picked it up. The best way to find out if you have lyme is to treat it with a lyme doctor. Look into Minocycline + Copaxone, this is the best most effective med for MS and coincidentally, it will cover lyme at the same time. You really need to understand that Lyme is a clinical diagnosis and the testing is so unreliable it's worthless, especially when you suppress your immune system like you are doing with interferon. The best way to tell is to treat and examine the reactions to the antibiotics. Just needed to add this, don't give up. Did you get tested for CPN also?



Hi Bartman

Thanks for that. I don't know which test I had. My American Doc is off and the best I could get from the Arab Locum was - 'the test was negative'. The test went to a Mayo clinic in the USA (Im in Saudi Arabia).

I have wondered about trying to get some Minocycline off label (my Doc wont Im sure) and trying what you suggest. Its a bugger because my Father used to be a Pharmacist and could have easily obtained what I need :wink:

Interestingly I came off interferon for about 10 day last month and definitely felt better.....

I don't ever recall getting the classic tick bit bullseye but my association with deer has been quite close - in the last 5 years 2 have ended up in the trunk of the car :wink: . I have lived in areas with heavy deer populations since 1995 and done a lot of woodland hiking.

Do you have any information on Lymes Docs - in Europe preferably?
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Re: Lyme and ME

Postby bartman » Tue Oct 11, 2011 4:51 pm

Unfortunately, I don't know of any doctors in Saudi Arabia. I would check CPn Help.org and see if someone there could recommend a doctor over there. There are several studies out showing that the combination of minocycline + copaxone is effective for MS. Take the studies to your doctor (they are easily found on the web) and beg him to prescribe if you need to.
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Re: Lyme and ME

Postby mrbarlow » Wed Oct 12, 2011 1:53 am

bartman wrote:Unfortunately, I don't know of any doctors in Saudi Arabia. I would check CPn Help.org and see if someone there could recommend a doctor over there. There are several studies out showing that the combination of minocycline + copaxone is effective for MS. Take the studies to your doctor (they are easily found on the web) and beg him to prescribe if you need to.


Thanks

From what I can work out Mayo Clinics protocol is to test with Elisa and if thats positive do the WB test which is bollux as loads of people who test negative on Elisa test positive on WB.

Trouble is even the western docs here behave like programmed drones :sad:
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Re: Lyme and ME

Postby johnmike » Tue Nov 15, 2011 8:15 pm

Would it be possible to get an LLMD in Houston posted here or PM'D to me?
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