posted
Hi- I've been away for a while- try to forget that I have this disease and go about my life as best as I can. Well, I'm back and need advice. Many years ago, before all this Lyme thing, I thought I had MS- had all the signs and symtoms but nothing. I persisted and discovered I had Lyme and was treated for approximately 5.5 years- I got as good as I could get. Anyway, many of the symptoms have returned with the added bonus of being severely constipated and extremely nauseous. Well, since I've always had stomach problems an endoscopy ruled out anything other than gastritis and a slow moving stomach- nothing to write home about! A nurse friend of mine brought up MS and as I delve more and more into it, I think I could honestly have MS as well.I read something once that many that have MS could have Lyme but not the other way around- or something like that. So I made an appointment with an MS specialist in hopes that I get to the bottom of this. My question to you is (1) is it common that people with Lyme have MS and (2) should I disclose all this information to the dr. or withhold it until a final diagnosis is made so that she isn't swayed to believe that it's all just the Lyme. And (3) do ya'll know where I can find an MS checklist that I can take into her office on the day of the appt. Thanks for all your support and have a great day!
Posts: 247 | From san antonio,tx | Registered: Oct 2004
| IP: Logged |
posted
FYI: there is a physician (pathologist) named Gabriel Steiner, MD, who studied MS extensively in the 1940's and 50's and published several papers in which he explained why he believed MS is a spirochetal infection. He thought it was caused by a specific borrelia, a different one from the one associated with Lyme, which he named borrelia myelopthora due to its affinity for myelin.
Unfortunately his work has been forgotten today, but I have read his papers and I suspect he was right. Especially in light of things we now know about borrelia that were not known when he was publishing. (He did not have DNA tests for example).
Dr. Steiner had an interesting background because before he studied MS, he studied syphilis. Hence he had a great deal of knowledge and expertise with spirochetal infections. He was a brilliant man.
This is not to ignore the "autoimmune" component of MS... but it may be that it is REACTIVE to an infection rather than the primary cause.
If you compare Lyme and MS symptoms, you will easily see that although there are differences, there are some striking similarities ... such as symptoms coming on in "episodes" with intervening latent periods, which is a characteristic of spirochetal infections.
If you have access to a medical library, I suggest you read Dr. Steiner's papers. Worth every minute of your time. Then take a look at some of the current pictures published by Judith Miklossy and others of Lyme in its non-spirochetal, round forms.
STEINER G. Acute plaques in multiple sclerosis, their pathogenetic significance and the role of spirochetes as etiological factor. J Neuropathol Exp Neurol. 1952 Oct;11(4):343-72. http://www.ncbi.nlm.nih.gov/pubmed/13000443
Also consider whether yeast might be a part of the picture... it can be an additional factor after a long period on antibiotics, even though your treatment was some time ago.
-------------------- Please consult your physician before making any changes to your diet, medications, or supplements. I am not a healthcare professional and nothing I write should be construed as medical advice. Posts: 166 | From USA | Registered: Dec 2014
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- jo,
glad to see you posting - unfortunately, many here will not be able to read your post due to the solid block of text. It's best to keep paragraphs about 3-4 lines or less so you get more who can read and reply.
I don't know what you wrote but, in answer to the question posed:
Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sonatina,
Thanks so much for that detail about that other spirochetal infection, too.
It could also be along for the ride in someone diagnosed with borrelia burdorf., too, yet points out what spirochetes can do, for sure.
There are over 300 strains of borrelia and few doctors even know that. Spirochetes have not been a huge draw for most doctors (though they should be), maybe just too complicated for the industry's manner of practice. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- jo,
when you were treated, were other tick borne infections considered?
Aspartame? Hopefully, it's not in your life. If so, it could explain a lot.
My eyes were able to link onto your saying that you are "severely constipated and extremely nauseous" (end quote)
Liver issues might be considered. Porphyria, especially as it can cause those GI symptoms as well as neurological symptoms that can look just like MS. Detail here:
posted
Keebler, You make a good point. A person could certainly have more than one strain of borrelia, hence both "Lyme" and "MS" symptoms mixed together.
I know there have been studies showing patients (or ticks) with more than one strain of Lyme borrelia.
S.
-------------------- Please consult your physician before making any changes to your diet, medications, or supplements. I am not a healthcare professional and nothing I write should be construed as medical advice. Posts: 166 | From USA | Registered: Dec 2014
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
jo3...
Here's a great article discussing the correlation between the frequency and location of MS (and schizophrenia) cases, with the seasonal population and geographical distribution of ticks:
posted
Thanks all, for your replies. I was treated by an extremely exceptional Lyme-literate dr. in Louisiana He did treat co-infections, in treatment approx. 6.5 yrs. total. How much more until you just don't get any better?? I have nothing left to do for Lyme.
Posts: 247 | From san antonio,tx | Registered: Oct 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Have you been assessed for porphyria? For Celiac - with a genetic blood test (as often, other tests miss it)?
the constipation and nausea would fit either of those as well, both can cause all kinds of pain and neurological issues. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
My dr. agreed with me that I'm as good as I'm gonna get. Now what?
Posts: 247 | From san antonio,tx | Registered: Oct 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say that your "dr. agreed with me that I'm as good as I'm gonna get. Now what? " (end quote)
Get a different doctor &/ or a different approach. Consider all possible influences & options not just in treatment &/or support options but also in what kind of air "intake" you are around, what you eat, drink, etc.
There may be some things not yet considered. Still, I would not assume that 6.5 years is long enough to tackle lyme. I would consider a RIFE MACHINE at this point not just regarding lyme but also other possible infections.
Be sure ALL possible coinfections & chronic stealth infections really have not just been considered but addressed if on board. There is a reason lyme & co. are all called "stealth" infections.
Are you chemically sensitive? Molds?
Celiac, porphyria, MTHFR / methylation issues - I would assume all have been explored just be sure the testing / assessment methods were adequate.
Dairy? Other particular foods? Products, etc.
I know this is very rough & tumble to be sorting through all this still, yet, there may well be some ways to find what you need. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not exactly the diagnosis for your GI symptoms yet there are some similarities and maybe some things that help this would be of help to you.
posted
You all bring up interesting points and I appreciate it. Coinfections, to my knowledge, have been treated. Celiac was tested for as well as stomach biopsies and nothing but gastritis. Slight case of gastroparesis.I don't know if I was ever tested for MTHFR/porphyria. My evergoing complaints are my fatigue and my memory which just get worse-the weakness I have in my legs and the constipation/nausea are what make me wonder now if it could be MS. I'm in Texas-we got nobody here and like I said, I traveled to Louisiana which was the closest dr.
Posts: 247 | From san antonio,tx | Registered: Oct 2004
| IP: Logged |
posted
How do I do this? Find another doctor, another approach? Just like you, I am so sick of this disease. A stupid question- if (mis)diagnosed with MS, are the treatments detrimental to Lyme? Will it help it or hurt it?
Posts: 247 | From san antonio,tx | Registered: Oct 2004
| IP: Logged |
posted
Testing for celiac rarely produces results .. especially if it is not done correctly ... I would try going gluten and dairy free and see if that helps.
Have you treated candida?? If you've been on abx, you're at high risk of having it. It can sure mess with your mind and of course, your energy.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Agree with Lymetoo re: MS meds killing folks who really have lyme.
It is awful to see. They shrivel up and waste away.
Sorry to be so graphic.
With the memory and stuff, if it was me, I would get a reassessment by an LLMD, just to be on the safe side.
Heck, it won't hurt. Whereas taking MS meds with an active lyme infection means wasting away and death.
I agree with you, I hate these stinking tick borne diseases.
Look on the bright side, (kind of), if it is lyme, then it is neuro lyme. If you start treating right away with a competent LLMD, you will start to slowly get better.
Perhaps any round bodies from your last lyme treatment have re-emerged as spirochetes, and reproduced so now your immune system can't keep the balance.
Maybe it isn't so far now, and you can get the balance back.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
posted
Lymetoo- yes I took Flagyl and Tinidszole for a long time and it put me on my %&#!!! Candida treated too Someone else asked if I was sure that I had Lyme- yes, bulleye's rash- IGENEX tested Coinfections treated as well....and I just keep getting worse- slowly- but worse
Posts: 247 | From san antonio,tx | Registered: Oct 2004
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Consider parasites (check out symptoms below). They hold people back, and most don't even know they have them.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Yeast goes on for YEARS... I still battle it and I've been well and off abx since 2004!!! I still have to take Oil of oregano daily and probiotics. Without them, I'm a mess.
Foggy head and stomach issues can be yeast. Going gluten free long term is really the only way to determine if you have Celiac.
And also a missed coinfection.
If my LLMD ever told me 'this is as good as you'll get', I'd be running out the door for a different one. 10 years later, I am still under the care of one. Lo and behold, just last winter, I found out I had mycoplasma pneumonia - off the charts high on the test. I'm still treating it with Byron White herbs.
Treatments changes, tests change. Get a new LLMD. And please stay away from the 'MS specialist'.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
posted
I saw Dr K in CT yrs ago. He uses IVIG or Copaxone for MS/Lyme problems..which I have both. My ins quit paying for IVIG 1yr ago. It didn't help. . Finally got IVIG approved again. So looking forward to feeling better
Posts: 315 | From USA | Registered: May 2005
| IP: Logged |
posted
I really don't know what I'm going to do if all of this is actually due to Lyme- I have nobody around Tx and can't afford to be flying all over as I did every 3 months.The Louisiana dr is now out of the question so where to?
Posts: 247 | From san antonio,tx | Registered: Oct 2004
| IP: Logged |
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Jo3,
So very sorry to learn of your continuing state of deteriorating health. It's truly worse than awful. I know.
Is there someone in your area who can give you high-dose Vitamin C IVs? These were really the turn-around for me, and usually don't require travel.
Take a look at http://www.betterhealthguy.com for data on Detrich Klinghardt. The notes on the "Beyond Lyme" conference are quite revealing.
For consistent improvement in the mental area, the first thing that worked for me was Klinghardt's recommendation to take 10-20 of the small chlorella tablets about half an hour before eating and then some cilantro tincture about 30 minutes later, then eat. This gets metals out of the brain and then out of the body.
Watch it on the cilantro dose---a few drops at first to see if there is any adverse reaction. Start with once a day, and increase the number of times as things improve.
Hope this helps!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic