posted
Hi all - I've had weird autoimmune and neuro symptoms for years (including peripheral neuropathy, Sicca Syndrome, Interstitial Cystitis, vulvar skin issues and vulvodynia, just to name a few, many other weird symptoms). Years ago a doc said I had Sjogren's Syndrome, but I have always been seronegative for all autoimmune markers. I went to Johns Hopkins Sjogren's Syndrome Center last summer, but I did not meet their strict American European Criteria so I was not diagnosed with Sjogren's. Though they did say that I definitely have something going on, maybe pre-Sjogren's or Autonomic Nervous System Dysfunction. I was also tested for Lyme years ago and told that I did not have it. They also did a Syphilis test to follow up and be sure. I was negative for that too. So that was years ago. Over time, the symptoms have slowly progressed, and new ones have cropped up. One of my docs recently recommended I go to a family medicine doc in our area who is (supposedly) lyme-literate and has developed his own unofficial subspecialty diagnosing and treating lyme.
I went to see him and he ordered a whole host of blood tests. Honestly, I did not think I had chronic lyme. I feel like I don't have what I have been told are the classic symptoms and presentation. I don't have bad joint aches. I have fatigue but not disabling fatigue.
Anyway, you all are so smart on all this stuff and I'd appreciate some feedback on (1) whether I can trust this diagnosis and (2) his suggested protocol.
(1) The diagnosis
The Western Blot results were NEGATIVE in the IgG category, but in the IgM category my result was POSITIVE. Specifically, the results show "PRESENT" in IgM P41 Ab., IgM P39 Ab., IgM P23 Ab. so the final line item "Lyme IgM WB Interp." says POSITIVE.
He also did a test called "Abs.CD8-CD57 + Lymphs" my result was 54/uL, which is low. The normal range is 60-360/uL. He said this indicates that my immune system is compromised.
He did a bunch of other tests, but the last one I'll mention is the "Celiac HLA DQ Assoc." For DQ2, I was NEGATIVE. But I was POSITIVE for DQ8. I don't believe this means that I definitely have Celiac, but it means that I am genetically predisposed. Is that correct? All other tests I've had for celiac including biopsy from colon and upper GI and including a stool test from Enterolabs were negative.
(2) The Recommended Treatment
This lyme doc basically follows what I've been told is the Marshall Protocol. The doc says I will need to take low dose antibiotics long term. We will need to change antibiotics every couple of months. He also wants me to take a blood pressure medication called Benicar because he says that breaks down the biofilms on the bacteria and helps the antibiotics work better. Frankly, being on a blood pressure med scares me My BP has always been low. Plus, the doc says I have to get the med from Canada because my insurance won't cover it since it is not a conventional treatment for lyme. I have never ordered drugs from Canada. Anyone know of a reputable Canadian pharmacy?
I'm on a whole host of supplements already but he's recommending more. Specifically, he wants me to take Lumbrokinase while on the ABs and he wants me to take Samento (extract) and Banderal (elixir).
Another interesting tidbit. One of my docs recently directed me to pulse dose prescription megadoses of Vit. D over the next several weeks/months to get my D levels up. But the lyme doc said not to because the lyme synthesizes Vit. D and D helps the bug thrive. I said, well if I'm low, then is the lyme really synthesizing the Vit. D? He said that the other doc should have tested my activated D because that is a more correct test and that would probably show that I have high levels of D. What??
Anyway, I already took the first megadose of prescription strength D last week so there's probably no point to doing the activated D test now since I have megadose of D in my system.
I want to trust this guy. He seems very smart and lyme literate, but I am also apprehensive. At the same time, maybe this is the answer I've been looking for that truly connects all the weird health issues I've had for 16 years. And there are the dietary changes that he wants me to make. Those are so difficult when I work 50 or more hours per week. Plus, I am already skinny. Removing gluten and dairy instantly makes me lose weight...too much weight.
Ugh. I don't know whether to be hopeful or skeptical. I am definitely scared. I know lyme is an ugly disease and can take years to treat. Also, on the Western Blot test results, it says that sera from individuals who have certain illnesses such as autoimmune conditions, Epstein Barr, etc. may cross react. I have tested positive for Epstein Barr and I have autoimmune problems. Is it possible for this to be a false positive? Is that was "cross-react" means?
I would appreciate any wisdom any of you have re: the info on my diagnosis and on his suggested treatment plan.
Thanks, Axseptants
Posts: 52 | From Central VA | Registered: Jun 2011
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posted
Whew... I have some of the same issues, IC, Sjogren's, etc. I've been taking Vit D3 for a few years. Someone told me this weekend that the D3 could be making my Sjogren's worse. I was very confused too!!
I just have never "believed" in restricting Vit D if I'm low in D ..?? I also cannot take Benicar. No way. My BP has been running in the 80's and 90's lately.
For now, I am cutting back on the D to see if there's any change.
I don't think you should ignore a positive test .. to me, a positive is a positive.
------
("The Western Blot results were NEGATIVE in the IgG category, but in the IgM category my result was POSITIVE. Specifically, the results show "PRESENT" in IgM P41 Ab., IgM P39 Ab., IgM P23 Ab. so the final line item "Lyme IgM WB Interp." says POSITIVE.")
PS... I've been successfully treated for Lyme and have been off abx for many years.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Well I guess if someone can be positive on pregnacy it might be that one is just a little pregnant?
The IgM postive means from everything I have been taught and read from a pretty smart LLMD doctor....means chronic you've had lyme antibodies for a long while.
Since you went to John Hopkins and they didn't do squat for you and your health problems you probably should try this doctor and his protocol and see if he can help you.
also if you listen to a long list of docs they tend to not agree on anything. Especially if one or more of the docs have super egos and think they know it all because they have a degree on the wall that says so.
My best advice is to do some research on this site with years of information on specific questions ex: there is a search button at the top of this page that says search. Enter
and go to subject and put in Vitamin or Vit d and read hundreds of threads from others with good experiences with vit D and maybe info to the contrary.
We are completely different in how we react to almost everything including vitamins. One man's poison is another man medicine.
I know that sounds weird...but it happens over and over again. The majority of lyme & co infected ill patients are lacking vit D.
Why I can't really say whether the borrellia eat it, live off it or what. You can research for both agruments.
If you ask my opinion I think this bacteria will do anything, eat anything and survive at almost all costs. I think of it as the smartest bacteria alive.
It is actual able to change its form in order to survive the enemy like antibiotics. I call it a super bacteria. The medical field is finally telling us that there are super bacteria in this world that they do not know how to kill off for sure.
I can see you've taken some awfully good notes on this LLMD visit. He has his protocol and I can't question him because I don't know him or meet him or seen him.
You just need to put your trust in some doctor. By the way you can also search EBV and find thousands of us positive for EBV especially early into our illness.
The only thing I worry about when someone new gets so many things thrown at them is too take things slow. One new supplement, one new vitamin and one new abx and one new herb at a time.
You throw the kitchen sink at a immune compressed body and you might create at monster.
Sometimes we don't realize the "treatment" that is making us worse or taking too much of a toll on the body.
The only thing worse than the lyme bacteria and the destruction it plays on the body is..... trying to destroy the lyme bacteria.
It will fight you all the way. I can't stress enough the importance of detox, detox, detox. That word will also mean a whole another vocabulary of things to different people.
I wish you the best. Try not to become overwhelmed because it is alot to learn, read, research and trying to figure out YOU and what YOUR body can handle.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I think map1131 's response has wisdom. Throwing everything but the kitchen sink at once is maybe not the best choice. Good luck axseptants.
Posts: 65 | From oregon | Registered: Jun 2011
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
1. Trust the Lyme diagnosis. I don't know about those Celiac results.
2. You couldn't pay me to do this protocol. Please get a second opinion from another LLMD.
Please, please read up on the Marshall Protocol. I don't think this doc understands it. The Benicar does not break up biofilm. It binds to Vitamin D receptors.
I doubt you will be able to work and do this protocol. It is very restricting. It can be incredibly dangerous. Do your homework.
posted
Thank you to all of you for your advice. I am going to do some more research. I agree that I need to understand all the issues more. I also have chronic problems with yeast infections and have for YEARS. I've gone through periods of having to be on antifungals for months at the time. I am scared about going on long term antibiotics because they can increase problems with yeast and candida. Have you all experienced this? How have you dealt with it?
Posts: 52 | From Central VA | Registered: Jun 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
HLA-DQ8 is one of the genes that is known to be associated with Celiac Disease. Yes, it is possible to have this gene and test negative for Celiac Disease.
Marshall's protocol only applies to those who's body has an error somewhere in the processing of Vitamin D such that too much of the active form of Vitamin D (1,25 Vitamin D) is produced. Because of this, both the 25 Vitamin D and the 1,25 Vitamin D levels need to be tested. The only situation in which it makes sense to me to restrict Vitamin D exposure (supplements, foods, sunshine) is in the context for which the Marshall Protocol was initially designed - high 1,25 Vitamin D. If the 1,25 Vitamin D is not high, then the protocol is not likely to be appropriate for you in my opinion.
Having a Positive IgM Lyme Western Blot result means you very likely have an active Lyme infection. This may be the cause of your persistant yeast infection issues. Lyme Disease is known to compromise the function of the immune system.
In my opinion, EBV is a separate issue from Lyme and should be treated independently - with anti-viral medication and/or herbs.
Strongly suggest that you consider taking high-dose probiotics if you are not already doing so. This should help the yeast issue, and may help your immune system in general. It will also be helpful for preventing yeast problems from antibiotics, should you choose to go that route for Lyme treatment (there are alternative protocols for Lyme).
Pardon any typos...can't remember how to spell this morning...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
That was very helpful information, Razzle. If I were to be tested for the 1,25 D do I have to go off Vit D for awhile first??
AX... Get some Theralac or VSL#3 for your probiotics. If you take those and follow the diet you may be able to treat successfully. I had yeast before I began lyme treatment too. You could also consider Rifing as treatment.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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posted
I've had my 1,25 checked before... sometimes it's high, sometimes it's normal.
According to my endocrinologist, this is perfectly fine, as 1,25 varies depending on when it's tested, body stores, etc. Unless it's super high, or you have something like Sarcoidosis , I'm not sure it's an issue.
Personally, I think Marshall is a bit of a quack (he's not even a medical doctor, so not sure if the term quack applies exactly). Perhaps his therapy will help those with Sarcoidosis, but for everyone else... eh...
The doctor you saw may be correct with his diagnosis, but I'd recommend finding a different LLMD for treatment.
Posts: 584 | From NY | Registered: Feb 2009
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posted
I'm not a fan of the Marshall Protocol. There are a lot of protocols out there, and this one is actually meant for a different disease than Lyme, and personally (and I'm not a medical professional), I don't think it translates well to Lyme. Just my non-medical opinion. I do so much better on Vitamin D.
As far as the celiac tests. You can carry the gene and not have the disease. If you ever have GI symptoms, I'd retest to see if you've developed it. Some of us do better gluten free, even if we don't have celiac, I know I did for two years, then I could eat gluten again.
Your testing and symptoms indicate Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by axseptants: Hi all - I've had weird autoimmune and neuro symptoms for years (including peripheral neuropathy, Sicca Syndrome, Interstitial Cystitis, vulvar skin issues and vulvodynia, just to name a few, many other weird symptoms).
Years ago a doc said I had Sjogren's Syndrome, but I have always been seronegative for all autoimmune markers.
I went to Johns Hopkins Sjogren's Syndrome Center last summer, but I did not meet their strict American European Criteria so I was not diagnosed with Sjogren's.
Though they did say that I definitely have something going on, maybe pre-Sjogren's or Autonomic Nervous System Dysfunction.
I was also tested for Lyme years ago and told that I did not have it. They also did a Syphilis test to follow up and be sure. I was negative for that too. So that was years ago.
Over time, the symptoms have slowly progressed, and new ones have cropped up. One of my docs recently recommended I go to a family medicine doc in our area
who is (supposedly) lyme-literate and has developed his own unofficial subspecialty diagnosing and treating lyme.
I went to see him and he ordered a whole host of blood tests. Honestly, I did not think I had chronic lyme.
I feel like I don't have what I have been told are the classic symptoms and presentation. I don't have bad joint aches. I have fatigue but not disabling fatigue.
Anyway, you all are so smart on all this stuff and I'd appreciate some feedback on (1) whether I can trust this diagnosis and (2) his suggested protocol.
(1) The diagnosis
The Western Blot results were NEGATIVE in the IgG category, but in the IgM category my result was POSITIVE. Specifically, the results show "PRESENT" in IgM P41 Ab., IgM P39 Ab., IgM P23 Ab. so the final line item "Lyme IgM WB Interp." says POSITIVE.
He also did a test called "Abs.CD8-CD57 + Lymphs" my result was 54/uL, which is low. The normal range is 60-360/uL. He said this indicates that my immune system is compromised.
He did a bunch of other tests, but the last one I'll mention is the "Celiac HLA DQ Assoc." For DQ2, I was NEGATIVE. But I was POSITIVE for DQ8.
I don't believe this means that I definitely have Celiac, but it means that I am genetically predisposed. Is that correct?
All other tests I've had for celiac including biopsy from colon and upper GI and including a stool test from Enterolabs were negative.
(2) The Recommended Treatment
This lyme doc basically follows what I've been told is the Marshall Protocol. The doc says I will need to take low dose antibiotics long term. We will need to change antibiotics every couple of months.
He also wants me to take a blood pressure medication called Benicar because he says that breaks down the biofilms on the bacteria and helps the antibiotics work better.
Frankly, being on a blood pressure med scares me My BP has always been low. Plus, the doc says I have to get the med from Canada because my insurance won't cover it since it is not a conventional treatment for lyme.
I have never ordered drugs from Canada. Anyone know of a reputable Canadian pharmacy?
I'm on a whole host of supplements already but he's recommending more. Specifically, he wants me to take Lumbrokinase while on the ABs and he wants me to take Samento (extract) and Banderal (elixir).
Another interesting tidbit. One of my docs recently directed me to pulse dose prescription megadoses of Vit. D over the next several weeks/months to get my D levels up.
But the lyme doc said not to because the lyme synthesizes Vit. D and D helps the bug thrive. I said, well if I'm low, then is the lyme really synthesizing the Vit. D?
He said that the other doc should have tested my activated D because that is a more correct test and that would probably show that I have high levels of D. What??
Anyway, I already took the first megadose of prescription strength D last week so there's probably no point to doing the activated D test now since I have megadose of D in my system.
I want to trust this guy. He seems very smart and lyme literate, but I am also apprehensive. At the same time, maybe this is the answer I've been looking for that truly connects all the weird health issues I've had for 16 years.
And there are the dietary changes that he wants me to make. Those are so difficult when I work 50 or more hours per week. Plus, I am already skinny. Removing gluten and dairy instantly makes me lose weight...too much weight.
Ugh. I don't know whether to be hopeful or skeptical. I am definitely scared. I know lyme is an ugly disease and can take years to treat.
Also, on the Western Blot test results, it says that sera from individuals who have certain illnesses such as autoimmune conditions, Epstein Barr, etc. may cross react.
I have tested positive for Epstein Barr and I have autoimmune problems. Is it possible for this to be a false positive? Is that was "cross-react" means?
I would appreciate any wisdom any of you have re: the info on my diagnosis and on his suggested treatment plan.
Thanks, Axseptants
Hi and welcome - am breaking up the text for easier reading for many here -
Lyme presents differently in everyone. There are 100 different strains of it in this country. We all have different genetics, biochemistry, physical weaknesses that the bacteria can target. You do describe Lyme symptoms here.
You also have a positive Lyme test, with specific bands for it. So, methinks you belong here! Plus a somewhat low CD57 count.
The Marshall Protocol helps some people. I have a friend here who swears by it. She said the benicar really helped her. We are all different. What helps some will not help others.
I think the MP can be one piece of the puzzle, but I think we generally need a more comprehensive treatment plan. Sometimes people start with something, get those benefits, and then switch.
Lyme patients are usually low in Vit D. We can get bloodtested for it. I suggest getting a baseline count, so you know what you're starting with. Taking one dose I don't think will throw you off that much, as it takes time for Vit D levels to rise.
Although, it's tricky with MP - they usually think it's wrong for us to be exposed to Vit D. I disagree - I think we need it, so does my LLMD, who's really up on alternative care knowledge.
Re testing - people can have multiple infections. So maybe you have EBV too.
Other will be along to make more comments about the Qs you're raising.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Wow-we have alot in common. I am sending you a very lengthy private message.
Posts: 412 | From Virginia | Registered: Sep 2010
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Ax - similar things with me. Severe Sjogren's symptoms but Ab and related tests neg. My eyes also extremely sensitive to light and glare.
I have many positive bands but wonder if they are cross-reactions or in fact Lyme.
Researching I found something interesting that I posted here on 6/13 "MCS/CFS/BB....". I guess no one read that or found it interesting - whatever - no replies. There - under MCS/hypersensitivites - clicking on Wiki - sicca is mentioned. Otherwise there are bloodtests results on a guy from Belgium? Including BB - which show positive bands. I cannot tell if the guy considers himself positive for LD - or..........the positive bands are cross-reactions. That is always the question for me -if the bands are not LD - can anything be construed from certain bands and combinations in determining an illness other than LD? What else could be causing positives?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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