Need Help….Having Mino Problems

[John McDonald]

Rhonda – Light sensitivity is discussed in great detail on the MP websites. I know exactly what you are speaking about, sun leading to dizzyness, headaches mallaise and fatigue. Search Amy Proal's sitefor a description.

[superperroRA]

Light sensitivity is often mentioned by Lyme disease sufferers. However, you live in a very cold place, so maybe Lyme is unlikely

[Maz]

[user=26]superperro(RA)[/user] wrote:

Light sensitivity is often mentioned by Lyme disease sufferers. However, you live in a very cold place, so maybe Lyme is unlikely

Hi Superperro,

Interesting you say this, because I have questioned this, as well. The Lyme tick actually has a two year life span, but somehow it thrives in the New England in spite of our harsh winters….though admittedly not quite as cold as prairie ones!

I was born in Swift Current, Sask. – a prairie girl – and though I left the province quite young, I remember the long, hard winters, but the very hot summers, too.

While I think freezing temps may reduce the numbers of animal carriers that the ticks feed off, I think these ticks are hardier than that.  They must be in order to have survived since time immemorial. Also, not forgetting that the world's population is very mobile now, going away for business trips and family vacations. Euope is fast becoming Lyme endemic with three known stains of Bb that affect humans, not to mention coinfections. I live in CT, but am pretty sure I got infected while in Cape Cod, as it was right after a weekend there that my fever, stiff neck and rash appeared. Also, my brother, who lives in southern Ontario used to visit South Carolina annually for buddy golf trips when in his 30s…he now has MS.

Here in the states, they are now saying that there have been reported cases of Lyme from nearly every state.

Here's A Canuck from Sask on CanLyme with his story:

http://www.canlyme.com/david_story_2006.html

Thanks for the interesting thought, as this has made me wonder, too. My feeling is that probably the prevalence of Lyme may be greater than in some areas, but more widespread than is reported in others.

Btw, CanLyme is a good resource for any Canadians wanting to research Lyme in Canada.

Peace, Maz

 

 

 

[Rhonda]

Lyme disease is definitely a possibility, we have ticks from April to mid June in sask, I have a cabin at the lake and pick numerous ticks off the dog. Although I have never found a tick on me, doesn't mean I have not been bit by one. I have never been tested for Lyme disease even though I knew about the disease and the symptoms that it causes. I just thought whether it is Lyme or arthritis what does it matter if it is all treated with AP, the outcome will be the same… so never really pushed for the tests. Also I knew that it is very hard to detect Lyme disease and trying to convince doctors to test for these things is like pulling teeth. I always wondered why I never showed Positive for RA, if nothing shows up in the blood work they call it sero negative arthritis. This is what I understand Sero negative Arthritis to be. But maybe I should push for the tests to be done it would be nice to know if it is Lyme disease. Is there a certain place to sent the tests and do I have to give this info to my doc.

[Michele]

Hey all,

The light sensitivity goes with most chronic disease. 🙁

When I mentioned to my PCP in discussing MP that I already have light sensitivity, his comment was that it goes with chronic disease. A woman I know with RA (15 yrs) and taking all the standard rheumy drugs, MTX, plaquenil, and enbrel, has this light sensitivity. So the standard treatments don't eliminate it, either. Well, at least for this person.

Those little arrows in my brain look at Marshall's explanation and see that once the Th1 microbes are gone, the photosensitivity goes away.

Michele

[Maz]

[user=85]Rhonda[/user] wrote:

Lyme disease is definitely a possibility…..I just thought whether it is Lyme or arthritis what does it matter if it is all treated with AP, the outcome will be the same… so never really pushed for the tests. … But maybe I should push for the tests to be done it would be nice to know if it is Lyme disease. Is there a certain place to sent the tests and do I have to give this info to my doc.

Hi Rhonda…you're right about the tests…they are hard to get docs to do and the standard tests are unreliable at best.

While mino should help if it is Lyme, it's worth bearing in mind that ticks pass on a plethora of other coinfections, too, that don't normally get tested and require a combo of antibiotics to treat. Interestingly, nausea and night sweats are pretty common symptoms of Lyme and coinfections.

If you're concerned about this, taking into account your past tick exposures, the best labs to get tested at are IGeneX and Central Florida labs. They both have websites and you call them to have them send you the pre-packed blood draw kits and paperwork. You get the blood drawn early in the week (to avoid weekend delays that may degrade the blood sample) and send it back in their special express mail envelopes. Unfortunately, it's not easy to have these covered by insurance here in the states, but it's pretty much a given you'd have to pay out of pocket from Canada. This is costly… Michelle just had some bloodwork done to send to IGeneX, so she may be able to fill you in on what she had to pay.  I paid somewhere in the range of $600 US last year.

Peace, Maz

 

[Rhonda]

Wow….I am now interested to find out about Lyme disease, it is interesting that you say nausea and night sweats are symptoms of lyme, you seem to know an awful lot about lyme. I have had this disease for about 7 years now, could these symptoms just appear now?  Thank you so much Maz, I did check out the sites that you gave to me… both the apple cidar vinagar and the lyme site all very interesting….

Sask girl hey….ya our winters are very tough here, this winter we went down to -50 with the wind chill…Brrr need a warm place.

[Rhonda]

Ok Maz…don't I feel stupid…I just seen at the bottom of your post RA/Lyme, hence your knowledge on Lyme. My bad!

[Maz]

[user=85]Rhonda[/user] wrote:

Wow….I am now interested to find out about Lyme disease, it is interesting that you say nausea and night sweats are symptoms of lyme, you seem to know an awful lot about lyme. I have had this disease for about 7 years now, could these symptoms just appear now?  Thank you so much Maz, I did check out the sites that you gave to me… both the apple cidar vinagar and the lyme site all very interesting….

Sask girl hey….ya our winters are very tough here, this winter we went down to -50 with the wind chill…Brrr need a warm place.

Hey Rhonda, fellow Saskatoonian!

Have you checked out the symptom list at CanLyme?

http://www.canlyme.com/patsymptoms.html

There are other symptom lists and interesting articles on some of the other big Lyme sites, too:

http://www.lymediseaseassociation.org

http://www.ILADS.org

As for your question about whether symptoms can appear long after infection…according to articles and case studies I've read online. as well as Lyme discussion boards I've joined, the answer is yes. Many chronic Lyme suffers wind up chronic, because they may get flu-like symptoms to start with and then this passes. They pass it off as some weird virus and that's that. Then, later…sometimes many years later…all sort of bizarre symptoms start cropping up that one can't point a finger to or it may actually get misdiagnosed as one of the rheumatoid diseases or MS. In one study my Lyme doc (LLMD) mentioned, he said that when the spinal fluid was checked for all of the MS patients in the study, every single one of the samples contained spirochetes. He then showed me a map of the incidence of MS in the US and overlaid it on a map of the incidence of reported Lyme cases and the two maps were virtually indistinguishable. Lyme mimics MS, Lupus, FM, CFS, RA, JRA, etc. There have even been studies on patients with morphea scleroderma where skin biopsies have shown evidence of Lyme.

The trouble with the Lyme spirochete is that it has the capablility to morph into various forms….the spiral-shaped spirochete, L-forms and speroblast, cyst forms. Not only this, as they morph, they leave intracellular fragments behind, called, “Blebs.” The reason it's so hard to treat chronic Lyme is because it balls up and morphs into its resistant cyst form when under threat – either from abx or a very strong immune response. It can't strictly be classified as a “bacteria”, because it shares characteristics with viruses (much like mycoplasma) and even fungi. Then there are the coinfections…like babesia, which is actually protozoan.

It's a pretty complicated infection and, unfortunately, very misunderstood. We have what are called, “The Lyme Wars” going on down here between the Infectious Diseases Society of America who drew up the very restrictive treatment quidelines for the Centers of Disease Control (CDC), which ILADs (Intl. Lyme and Associated Disease of America) is fighting.

You might find this article very enlightening, which outlines the politics surrounding this pretty volatile subject and, basically, what chronic Lyme sufferers are up against. This piece was written in response to an article published in the NEJM (New England Journal of Medicine).

http://www.myleftnutmeg.com/showDiary.do?diaryId=8493

This might make you laugh….when my parents first arrived in Swift Current as immigrants from England, in 1960 – the year I was born, my Mum got off the trans-Canadian train and stepped onto a single platform in the middle of nowhere and she just about fainted when she saw a gun-toting cowboy riding his horse down a dusty road with tumbleweed rolling behind him. She said she almost smacked my Dad upside the head for taking her to some God-forsaken place in the middle of nowhere! After settling into their rented house, the neighbors had a welcome corn roast bbq for them and my parents had no idea how to eat corn on the cob and burgers, so just tried their best with a knife and fork, much to the amusement of their new neighbors!

Peace, Maz

[A Friend]

Rhonda,

Try not to be overwhelmed.  As you read something, and have a conviction that this is something you believe would be beneficial, start slowly…. one thing at a time.  Then add another thing… or another food, etc.  You/we don't have to do it all at once — or know it all at once. 

I do urge you to get sugar out of your diet, and don't eat the processed food that has a zillion additives.  Until you are doing better, simple meals… lots of lightly cooked vegetables and salads, steamed brown rice with beans and peas, a little white meat of fowl, a little good fish — these should help your digestion and help keep yeast/fungus away. 

I thought yeast/fungus immediately as I read your symptoms, even though you said you take probiotics.  When we are on abx, we need to at least triple the dose daily that is on the bottle of probiotics, and take them two or three hours away from the abx.  I've read that the majority of people who have been ill long enough to be diagnosed with a chronic illness, have imbalanced gut flora already (meaning the bad guys outnumber the good guys down there). 

Best to you,

AF

 

[Rhonda]

Maz, A Friend,

Thank you for all the Info on Lyme this is something that I need to do some research on, Maz, you have given me alot of info to chew on…..TY! I was also wondering about yeast, I have seen diflucan mentioned several times on this site I think it might be something that I should talk to my doctor about.

FOOD….where do I start, I have read alot on this site about the changes people make with their food/diet, by cutting out everything and gradually adding things back in to see what they are sensitive too, all very good but so challenging to me. Also cutting out sugars, meats, processed foods….Yikes, MY Big secret……………. I am a coffeeaholic, in Canada we have Tim Hortons, it is probably like Starbucks in the USA…well I have to say that I have cut way back on my sugar, as I would say that I have 4 to 5 cups of coffee a day and it used to be alot of sugar with it, now I try to have just a winsy bit….Meat, well, love red meat, I am a steak girl, growing up barely ate fruits or veggies, meats and carbs, sausage deli meats….if its bad for you I ate it. I have definitely changed the way I eat, way more fruits and veggies, not as much I should…. but getting better gradually.

So I have to confess that I am very scared of the food thing I think that changing the way I eat is something that I need to learn about as I know absolutely nill about the foods I eat, I am guessing that Kraft dinner, and ricearoni and noodles in a bag with beef or chicken sauce, or the kraft pasta is probably what I should not be eating which is what we eat alot of, so this will be a HUGE change in my lifestyle and my family's. I just don't know where to start it's like starting over…. cooking the way grandma used to make…(I did learn to make perogies and cabbage rolls from her) Probably not good for you though…ARG lol.

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