The Lyme Disease Thread

[CarlaB]

It still could be hormonal even with the reaction to the zith .... Lyme can affect the hormones, so perhaps the hot flashes are just more severe when you're off the zith.

[mslee]

Ok

I am just trying to wrap my mind around all this, Ive been going through my old medical records and I found that they tested me for lyme once when I first started seeing an Rhuematologist.

The test & result was:

Lyme AB IGG Serum 1:28 with a note saying to re-check, but they never did.

I know I did get bit by a tick once for sure, and I am an outdoors person have spent alot of time traveling the country, camping, fishing, hiking.

But I have all this autoimmune stuff going on too, are there false positives in lyme?

I feel kinda dumb not decoding my blood work sooner and asking these questions, guess it took getting the gluten out of my diet to have the energy and mind clarity. There abnormal results left and right! How could these Drs not say anything!

grrr

My liver biopsy just came back positive for autoimmune hep with minimal inflammation. It does sound possible removing gluten may help my liver heal as well. Wait for the follow up to know for sure.

Thyroid is off as well

[CarlaB]

Did the Lyme test give a reference range? It was not a Western Blot ..... but even if it had been, most WB's are not very accurate, they leave out critical bands .... it would need to be IGeneX.

Lyme is unlikely to have a false positive.

Often chronic infection and autoimmune problems go hand in hand due to the immune system being on constant alert due to the infection.

I see you also tested positive for Lupus, that is not uncommon for Lymies.

That rheumy did you no favors not following up on that test.

Thyroid issues are common with Lyme .... I am hypo myself. A skinny hypo, go figure! And, I don't have celiac, so that's not the reason for me.

[mslee]

Did the Lyme test give a reference range? It was not a Western Blot ..... but even if it had been, most WB's are not very accurate, they leave out critical bands .... it would need to be IGeneX.

Lyme is unlikely to have a false positive.

Often chronic infection and autoimmune problems go hand in hand due to the immune system being on constant alert due to the infection.

I see you also tested positive for Lupus, that is not uncommon for Lymies.

That rheumy did you no favors not following up on that test.

Thyroid issues are common with Lyme .... I am hypo myself. A skinny hypo, go figure! And, I don't have celiac, so that's not the reason for me.

hmm

it said 1:28 was normal, but my results were in the out of range column w/footnote

Footnote says:

less than 1:28 negative

1:28 Indeterminate: suggest repeat if clinically indicated

greater than 1:28 positive

I see my Internist tomorrow, I was going to have her run labs for malnutrition vit/mineral deficiencies, test my thyroid, I could request Lyme and Graves too. Although it sounds like it might not do much good if I need an LLMD. I did get a name for one in my general area but of course they don't take my insurance.

Need to discuss with my Rheumatologist whether he thinks the Lupus is a correct DX or if it was Celiac being mistaken for Lupus. They just don't seem to know a whole lot about any of these issues.

It was suggested today I seek out Dr.'s preforming test studies for Lupus because they have tried all treatments and had no luck, there have not been advancements in treatment in like 40 years!

Are Thyroid issues fairly easy to treat or are they as complicated as everything else???

Thanks!!!

[mftnchn]

Mslee, seems like retesting through Igenex would be helpful, as much of the other issues could be lyme related.

Carla, that's a good point about the hormonal influence of lyme. I know that the sweats were worse in the summer, some nights really soaked; and I was off Zith then too.

Just now things are complicated by the discovery that my almonds here might be a problem.

[CarlaB]

Mslee, most LLMD's do not take insurance thanks to the IDSA. This is where the political battle with Lyme comes in. To make a long story short, LLMD's are willing to treat the way they think is the right way to treat and don't take insurance because the insurance companies won't always pay.

It's worth getting the right treatment, even if it's not fair.

With all your treatment failures for Lupus, and with the equivocal test, I know I would want to at least properly rule it out.

[nora-n]

Thyroid: for many people, treatment is straightforward, but then is the rest of us.....check the forum at Open Original Shared Link, or any other thyroid forum where patients post. In essence, relying on the TSH for doseage may not work, either because doctors do not know that TSH normally should be between 0,5 and 1,5 once treated, and the other reason is that a large minority just get low TSH on the right dose, and one must go by the ft4 and ft3 tests. Normally they should be around two-thirds up in the range, but some need them higher, and some lower, and some are okay with lowish ft4 as long ans ft3 is high. And, some only get beter on natural Thuroid USP, like Nature-throid or Armour Thyroid. The latter has supply problems right now but they will be solved in some weeks or months.

Treatment may be highly individual, and clinical response is more important than test results, but it is advisable to test every once in a while anyway.

nora

[Mtndog]

Yes, that is different from what I had with babesia. I would wake up absolutely drenched with sweat. Even my hair would be wet.

I had hot flashes, too. I would think it was hot when no one else would.

This is what I had too with the babs- soaking wet and then cold. It was horrid.

Lyme also messed up my thyroid- I'm subclinical hypo but taking Armour (which I currently can't find) or Thyrolar make a very big difference.

MsLee- Poor girl, you sound like you've been through the ringer (twice!). With all that's going on with you should definitely get an Igenix test!

[mslee]

Thanks all!

I'm getting as much blood work testing done as I can with my insurance waiting for results. That will give some idea of where to go from there. Yes I think the LLMD and further tests will probably be the next step.

They have pretty much told me they have done all they can for me with Western Medicine, that "I should seek out studies and research centers in San Antonio & Huston." at least here in Austin there are lots of options for alternative medicine. We will probably be in Colorado this time next year that will provide more options.

Can't believe how controversial all this is AND how little they really know. It's terrible that clearly sick people can't get the help they need!

[nora-n]

About the missing Armour, there is a lot on the Open Original Shared Link webside and forum, and to make it short, the manufacturing lines are being rebuilt. It is available in teh smallest doses but the pharmacies cannot do the math to make up your dose so they tell you they do not have it.......like one-and a half grain can be made up of 6 1/4 grain tablets....

Another option is to get it compounded, as the raw material is all made in one and the same factory, All American laboratories and I have not heard about any problem there.

Mary Shomon posted the name of her pharmacy and they are able to compound it, but any other compounding pharmacy can do that.

And, they can use any filler you tolerate.

nora

[CarlaB]

This is a video of C-span. It's the US Congress talking about Lyme Disease. The congressman who has been holding the Lyme Bill up in committee is getting blasted, LOL.

It's about 30 min. long, but worth it. Open Original Shared Link

[nora-n]

I checked out the posts on the bionic 880.

Forum postings were not so positive, they had gotten better, though.

it is just infrared light at a certain wavelength, and some pulses.

Lots of strange reports on the germany and dr W.

Looks like threads are being deleted and so on when people come back from Germany from treatments with dr w.

Open Original Shared Link scroll down. On the next page therer is a link to a youtube video about the bionic 880 by a connie who has a blog and sells books I think.

A comment on youtube: "This German Doctor, who speaks about 2000 cured people , doesn't tell the truth.

No way this is possible. I'm very active in the German lyme-net and not ONE person talked about sucessful treatment. If it was true, that people got cured - we would have heard about it.

Sorry for that.

By the way, I caught my first lymeinfection in California, 20 years ago. Nice souvenir.. "

I also found at the same time lots of postings on a cfs forum some clothes helped, they have platinum fibres of a certain length , in order to reflect certain infrared wavelengths, and a lot of cfs patients have gotten a lot better with those t-shirts or headbands etc. Even horses get better. They help for any inflammation too, so athlethes swear by them. These threads go back for a couple of years or more, adn they still swear by the vivitex clothesand fibres.

A japanese firm is the source of these pp items, and they also sell this pp dome.

I met a homeopath who has one of those domes, and fibromyalgia patients report getting better from using it.

Open Original Shared Link and it says those things ar popular in Spain, Portugal and Brazil and popular for cellulitis and infflammation. The homeopath says some customers just take these dome treatments to go down a size to be able to get into their dresses again for weddings etc. (instead of working out and dieting, when they are too lazy or busy to work out or diet)

So, according to the cfs people getting relief from teh infrared clothes, logic says the infrared machine should at least help a bit, at least temporarily.

I also found on the swiss forum that many have been helped by taking salt and vitamin c in doses of 1 gram salt per 6 kg of body weight per day. There is even this disturbing website lymephotos.com , you can delete this if you want.

I know that the people who lived here in this area before, used a lot of salt, because that is how they could store food. All meat and fish had to be soaked in salt for days and then dried, so people got much more salt in their diets before. the website said that lyme was not a problem until the low-salt idea came, and in Japan it was not a problem until low-salt soy sauce appeared. Also, I have read on other forums about the microfilaria, that is has to be take care of or antibiotics cannot finish the job. Some take ivermectin and mebendazol for that in lyme treatment so the antibiotics work better.

I will ask my local practitioner (she does muscle testing and has a scio machine) to test me next week. My mother is positive for lyme in a blood test.

nora

[CarlaB]

Yes, two threads were deleted by people who came home from Dr. W and posted on Lymenet. They were relaying their experience and as happens on LN, there were others who were just being rude ... it's one thing to disagree, another to be rude. So, the threads were deleted by those who started them. If you start a thread there, you can delete it in it's entirety, unlike here.

The Bionic 880 is used with Lyme nosodes and pulses. It's infrared light at the 880 wavelength. Dr. W also uses homeopathics and other things to help detox what's killed.

I know a lady there now who just finished treatment. She feels great and energetically tests as being Lyme-free.

One of the people who started a thread and deleted it is improving. She actually started it about her husband and he saw no improvement while in Germany though his Lyme was killed. He's getting further treatment for other issues (osteopath). He's no longer dealing with Lyme.

Another thread that was deleted was for another husband who is still seeing improvement. He no longer needs his wheelchair and is getting better and better as time goes on. He was rather ill with Parkinson's symptoms due to Lyme. He has been releasing a lot of toxins - metals, fungi, etc. now that his Lyme is gone.

This is just anecdotal evidence, but that is all we have till studies are done. It's a new treatment and it will take time to do the studies. I'm going because I'd rather go now and find out it doesn't work than wait and find out it does.

I find on Lymenet that people who are cured don't tend to come back to post ... almost all the people posting are sick. So, it's conceivable that those using the Bionic aren't posting on message boards. I don't know. Time will tell.

[nora-n]

Same on thyroid forums, it is the sickest people who post the most.

And on the courses with Lightning Process, they are told to stay away from the internet as all the negativity really makes you sicker.

I have problems with doctors lowering my dose when it is correct, that is why I keep coming back to thyroid forums. This is quite common (that thyroid patients get a low TSH on the right dose ,and with normal ft4 and ft3, and no signs of hyperthyroidism)

On the cfs forums I do read about things that helped, and those who are fine, only come back once in a while to report they are still fine, but they have to watch how much they do (every time they over-do activities or mind-work they have a small relapse)

It will be interesting to see what happens as more people try the treatment in Germany.

I hope you get better.

nora

[Rachel--24]

Nora,

I had read through some of that thread on LymeNET Europe awhile back. Some of the people posting there (including the one who started the topic) were banned from LymeNET for basically being rude and constantly bashing the alternative treatments. They were not allowing people to freely discuss these topics, share experiences, etc. Its ok to disagree or to be skeptical about these treatments....yet another thing entirely when you are actively trying to prevent these discussions from taking place.

I didnt gain anything from reading their thread...I guess they just continued with their "anti-alternative" behaviours on another board.

Also, the person mentioned in the title of the thread is one of the people who has helped me the most. She is not sick.....been healthy for a long time....and twice my age. I've been fortunate to learn from her experiences....as well as from the experiences of one of the other frequent LymeNET posters (who is also bashed in that thread).

Like you, I prefer to keep an open mind about the treatments in Germany. Some people are having good results. Hopefully Carla will too.

[CarlaB]

I had read through some of that thread on LymeNET Europe awhile back. Some of the people posting there (including the one who started the topic) were banned from LymeNET for basically being rude and constantly bashing the alternative treatments. They were not allowing people to freely discuss these topics, share experiences, etc. Its ok to disagree or to be skeptical about these treatments....yet another thing entirely when you are actively trying to prevent these discussions from taking place.

I didnt gain anything from reading their thread...I guess they just continued with their "anti-alternative" behaviours on another board.

Uh, yeah, that too.

Thanks, I am hoping this will be the answer. I am SO EXCITED! Only 8 more days!

[nora-n]

I read a little bit more on lne and yes, some of them ridicule anything alternative as a principle, that was my impression too. Too sad.

Over the decades, things now main-stream were alternative too, like gluten-free diet for celiac. Or, like the idea that vitamins and diet and nutrition had anything to do with illness. (i remember a doctor for the first time talking about that on the national tv station here one day in the 80's or nineties.....)

[rowe78]

I have been reading this thread for a couple hours now with rapt attention. Could this actually be my "issue"?! I've battled ill health in major life changing ways the past 5 years, but it really probably does go back to childhood. We were at a new friend's house last night for dinner. I told her of all my food allergy/sensitivity/smells issues (most prominent problems the past 2-4 years), how I've tested negative to Celiac's and a bunch of other things and how the doctors never find anything wrong with me yet I am sick off and on, always feeling as if there is something not right. She asked if they've ever tested me for Lyme disease b/c she had a friend either with Celiac's and Lyme, or just Lyme they thought was Celiac. I told her no. So today I wanted to look into this concept of Lyme disease and how it portrays itself at times through food allergies/sensitivities (to date I'm off wheat/most gluten/corn/corn derivatives/soy/dairy/all nightshades/peanuts/other legumes/fish/shellfish). I'm stunned. I quit counting how many symptoms listed on the first page I have or have had. I'm not sure how far back in my history to count things. I grew up playing in the woods outside of Cleveland (i.e. Great Lakes area). I also clearly remember a bite 6 or 7 years ago when I moved to NC they wondered if might be a tick bite. Not to mention I had another mysterious bite that wiped me out so bad I thought I was going to die when I was on a mission trip in Honduras. So between the likelihood that I was bit to the symptoms I wish it was Monday morning so I could call the doctor!

Just one main question, for most of you who have been diagnosed with Lyme does stress definitely make it flare up? We moved to Scotland just over a year ago. I was incredibly sick again the month before the move. The weird thing, I had new or changed symptoms, though also with some of the old ones. As we've settled into life and a routine here I've felt tons better. Still random symptoms here at there but not the daily drama like I was having.

Anyways, like many of you, I don't want this to be the answer and yet I do! So tired of it all....with no answers and little doctor support to find real reasons. Now the battle to actually get a doctor here to test me!

[dlp252]

Just one main question, for most of you who have been diagnosed with Lyme does stress definitely make it flare up? We moved to Scotland just over a year ago. I was incredibly sick again the month before the move. The weird thing, I had new or changed symptoms, though also with some of the old ones. As we've settled into life and a routine here I've felt tons better. Still random symptoms here at there but not the daily drama like I was having.

Anyways, like many of you, I don't want this to be the answer and yet I do! So tired of it all....with no answers and little doctor support to find real reasons. Now the battle to actually get a doctor here to test me!

Welcome! Glad you found us. Definitely YES, stress can cause flares. My LLMD (lyme literate medical doctor) actually wanted me to quit my job (in a law office) because of the stress it can cause. Stress can cause all sorts of problems and make many things worse even without lyme. Lyme seems to make everything else worse.

The lab to use in America is Igenix (link is on one of the first few pages of the thread I believe), but I haven't checked in a while about international patients. I think the blood needs to get to Igenix within a couple of days. Ack, my computer is so slow or I'd go check for you, lol.

[CarlaB]

I'm glad you may be getting answers to your health issues!! Yes, stress does cause me an increase of symptoms.

As you know, since you've read this thread, testing is difficult and finding a doctor to treat is even more so. My LLMD has patients who come from the UK for treatment. I am actually going to Germany for an alternative treatment next week. If you post on Lymenet (.org) under seeking doctors, someone can tell you where you will find an LLMD near you.

Chances are, you have a lot of things going on. With Lyme, it's NEVER just one thing. I have also been treated for mold, parasites, heavy metals, etc. I'm glad you're finding answers.

[truthsearcher]

Yes stress flares my Lyme.

Also stress causes you adrenals to work harder and many people with Lyme have adrenal fatigue or exhaustion which makes dealing with the smallest of stress almost impossible.

When I;m stressed I often get the chills w/o fever, fatigue, severe brain fog, aches and pains throughout my whole body and a very hot flushed feeling in my body.

[Mtndog]

Thanks, I am hoping this will be the answer. I am SO EXCITED! Only 8 more days!

Carla- That is AWESOME! I hope it's the answer. I want to hear all about it when you get back!

Yes- stress makes my symptoms flare too! I had a problematic PICC line for the past month and didn't realzie how stressful it was! I was exhausted constantly (I'm sure the IV abx added to this).

I found this article while looking for info on port catheters. It's horrifying but ends happily:

Open Original Shared Link

[CarlaB]

Carla- That is AWESOME! I hope it's the answer. I want to hear all about it when you get back!

I'll keep a blog while I'm there, so you don't have to wait.

[mftnchn]

Welcome, Rowe!

Stress impacts me too, I often have more symptoms after the initial stress is past, but yes, it can trigger a relapse for awhile.

If you have to travel to see an LLMD, just remember it is hugely worth it to have a good doctor. Lyme treatment is unique to each of us even while there are some similarities. It is also very complex. Fortunately, we often don't have to actually see the doctor but can have a phone appointment. Be sure to check out which doctors can handle long distance patients.

Also, just realize that with treatment we often get worse before we get better, or at least have a lot of ups and downs. Hang in there because eventually the better periods get longer and more prominent.

[MissCici]

I just found out today that my Igenx test was positive. I don't see my doctor until Tuesday, so I'm trying to do some research on my own until then. I didn't expect a positive result, and neither did my doctor, because my symptoms really don't fit well. I guess I will have to see how the doctor visit goes.

Cici