The Lyme Disease Thread

[CarlaB]

I'm glad to hear you're going to be tested Ursa. If you're interested, there is a doctor in Germany doing an alternative treatment for Lyme and has put 2000 patients into complete remission in the past 8 years. He has a 98% success rate using no antibiotics! It also only takes a few weeks.

Google Bionic 880. I can't read much on it because nearly all of it is written in German. I believe it's Dr. Woitzel doing the work.

[AndreaB]

I just started reading this thread, and can't possibly go through all of it, it would take days!

I printed the symptom list and ticked off the symptoms I remember (some I suspect I had, but I am not sure, like a rash). I have at least 45 of them.

I'm glad you will be getting Igenex done as well. Lyme sounds like a very good possibility with you.

[Ursa Major]

Thanks, Carla. Here is the English site that explains it all in (at times rather strange) English. The person who translated is very obviously translating a lot of terms literally, which you can't really do if you want to end up with 'normal' English.

Open Original Shared Link

I'll get my naturopathic doctor to read it. He is very open to learning something new. Who knows, he may consider getting this machine. It is not feasible for me to go to Germany for treatment at this time. Maybe next year, though.

[CarlaB]

Thank you Ursa .... I have read that, and a couple more articles. There is someone on Lymenet who is German but lives in WA who is posting a lot of info about it. She is on her way over there for her husband to be treated. Since she speaks German, she has even talked to the doctor. It's all fascinating.

I'm glad you're pursuing this avenue, I have often thought this could be one of your health issues.

[confusedks]

I just started reading this thread, and can't possibly go through all of it, it would take days!

Yay! I'm glad you're going to try to get tested. But you do have to realize that even though your test may be negative, you can definitely still have Lyme.

I'm glad you're pursuing this avenue, I have often thought this could be one of your health issues.

Me too! I think SO many people end up on this board thinking they have Celiac, and then go gluten free and don't get better (like me). But eventually find out about Lyme or heavy metals, etc.

[Ursa Major]

The thing is, that my grandmother died of stomach cancer (when my mom was only 20), my mother died of liver cancer, as did my dad, all seven of my siblings have symptoms of gluten intolerance, as do all five of my children (two of whom are gluten-free, and one sort of, and they are a ton better) and most of my grandchildren. Who also are now perfectly healthy on the gluten-free diet.

So, I am not positive that my gluten intolerance would be caused by Lyme disease if I have it. But I have way too many intolerances and health problems that won't go away on the gluten-free diet. They won't even go away with eating a very limited diet.

Some things are much improved, like the joint and muscle pain. And I am not usually forced to stay in bed with the fatigue (even though some days I would like to stay in bed, I am so tired).

If I wouldn't take hydrocortisone and fludrocortisone to help my adrenal glands, and dessicated thyroid for the thyroid I would be completely incapacitated.

But more and more I get the impression that the underlying problem could be heavy metals and Lyme.

If only my husband would be more supportive! I've now been searching for the answer for my health problems ever since we've had the Internet, which is about ten years. And I've tried a lot of different treatments and supplements, and many were not cheap.

He is not happy with me spending more money on trying to find out what is making me sick. He believes it is all psychological, and if I'd pray more and read the bible more and be who 'Jesus wants me to be' (in his opinion), than all my health problems would just go away. Meaning, that everything else is a waste of money that he works hard for (and yes, it is HIS money, as he won't easily let me buy anything, while he will buy whatever he wants).

I had a job for three years babysitting, but those people moved away, and I simply wouldn't have the energy to do it anymore now, even if I'd find somebody else to work for. My health is deteriorating, and my energy is getting less and less. And my family thinks I am just lazy. It is very upsetting.

[Green12]

Ursa, I'm glad you are going to look into lyme as a possibility for you. It might be the missing part of the puzzle.

Sorry you don't have the support at home with your husband

[AndreaB]

Ursa,

I also think something else is behind your health problems. It's just a matter of finding out what it is.

I'm also sorry about your hubby. I know how stressful that is for you.

[mftnchn]

Ursa I am also glad you are thinking of checking this out. I'm one who probably has both celiac as well as lyme. It is difficult to find the answers because a lot of causes seem to bring on similar symptoms. Just look at the similarity in the symptom list between celiac and lyme, let alone other diagnoses.

Sherry

[mftnchn]

Wow, I am really noticing an immediate herx response to increasing my Vitamin D dosage! Interestingly, in a google search I discovered several patients reporting the same phenomenon on www.cpnhelp.org. They are all taking similar antibiotics but treating chlamydia pneumoniae instead of lyme. They said they found research about D having antibiotic effect as well as increasing immune system function.

I haven't had such clear herx response to a medication/supplement since very early in lyme treatment.

Wouldn't it be amazing if this proves to be the answer to my treatment stuckness??

Also my doc told me I can monitor the levels for safety even out here where I can't get D levels done by checking calcium levels. He said that is where toxicity would show up. So I feel much safer trying higher dosages.

Also, for people who cannot afford treatments, this could be a relatively simple way to start--just have D levels done and if they are low try treating that alone. Perhaps along with magnesium though, I read that the D can deplete the magnesium....

Sherry

Sherry

[mftnchn]

By the way, I'm not suggesting D is adequate for treating lyme!!! But if you can't do anything else for various reasons, it might be something at least. And it might be a good thing to augment treatment.

Sherry

[CarlaB]

That's great, Sherry!

Last summer if I went out in the sun, I would feel bad the rest of the day, even after just 30 min. I know it wasn't the heat because I took saunas with no problem.

This year the sun doesn't bother me at all.

The three times I put this into remission, not knowing what it was (so without abx), the sun, diet, and exercise were involved.

You might be onto something.

[luckeeluke]

Last summer if I went out in the sun, I would feel bad the rest of the day, even after just 30 min. I know it wasn't the heat because I took saunas with no problem.

This year the sun doesn't bother me at all.

I had the same phenomenon with the sun. Before I ever took any antibiotics I seemed to react badly to the sun also. Now after a few months of antibiotics I don't really seem to have the issue as much anymore. I haven't changed my vitamin D intake, which at this point is very little. Vitamin D (any kind D2, D3, etc.) actually makes me feel much worse right after taking it, overall in my situation it doesn't seem to make things better. I might feel better for a few hours and then I feel way crappy for a long time. Mine doesn't feel like a "good" crappy.

I really think you can look at the vitamin D situation from two angles. It's hard to say weather it is a herx or whether your body's immune system is being supressed by the vitamin D and possibly the Lyme is taking advantage of that situation.

It's hard to speculate, but I think Trevor Marshall has some interesting research. I just feel like his theory/information fits my pattern/symptoms/illness. From what I can understand vitamin D acts like a steroid. Most steroids are bad for Lyme. I think the vitamin D that your body makes is slightly different from those that you get in foods and vitamins. I find it intriguing about the two types of Vitamin D, basically the "active" and the "inactive." It'd be cool if there was more research done on the relationship between the two and how it affects or helps the immune system.

If I have mis-represented any information, definitely feel free to correct me . . . I'm pretty much learning like everyone else.

But like everyone says how would you know if vitamin D causes a herx/killing bacteria or allow the bacteria to grow unchallenged.

On the flip side there is a lot of research that says vitamin D hlpes your body tremendously and is a part of many many processes. It's hard to argue with that.

[mftnchn]

This morning I tried just one nattokinase (that's what I have been on until last week) and waited quite awhile before taking the D. Not much symptom, so if I have it again after I've taken the D, I'll be pretty sure that's it.

My mind is much clearer today.

Sherry

[katbird]

Posted June 20th, 2008 2:46 PM

Thanks for the thread! It is interesting. I have a lot of those symptoms. I think I had thought about Lyme disease a few years ago when I had similar symptoms, but was never tested. What is the connection between Lyme and Celiac? I will discuss this with my doctor. I had mentioned floaters to my eye doctor last year, but he didn't really give me any reason for them. All very interesting and worth looking into. Thank you.

[CarlaB]

There isn't really a connection between Lyme and Celiac other than if you're predisposed to celiac, Lyme can be the trigger. I notice that on Lymenet (they have a message board) that many are gluten intolerant.

Be sure to read the first two pages of this thread .... there is a LOT of good information there about testing, it's inaccuracies, and why docs are so hesitant to test for Lyme at all.

Welcome!

[mftnchn]

Welcome!

I'm one that has both lyme and celiac. The symptoms can be very similar between lyme and celiac, too.

I've been treated for lyme but can't manage to maintain off antibiotics, so have plateaued for several years. Finding out I am celiac has been one piece of the puzzle. Celiac disease has a profound effect on the immune system. To maintain health with chronic lyme, a person needs a really good immune system.

Sherry

[susieg-1]

There isn't really a connection between Lyme and Celiac other than if you're predisposed to celiac, Lyme can be the trigger. I notice that on Lymenet (they have a message board) that many are gluten intolerant.

Be sure to read the first two pages of this thread .... there is a LOT of good information there about testing, it's inaccuracies, and why docs are so hesitant to test for Lyme at all.

Welcome!

Am going to PCP today and am anxious about her willingness to continue lyme treatment beyond 2 months. I have improved greatly in the last month but just found out that I should probably not be taking doxxy because I have hiatal hernia and barretts esophagus. This concern is after reading insert that came with last refill. Do you have any suggestions as to what I can pitch to my Dr to take instead? I think I will also request a genetic celiac test as I have never tested positive on celiac panel. Am hoping that gluten sensitivity is result of Lyme and may reverse with antibiotic treatment.

Carla, it is so good to have you continue to help people on this forum

[CarlaB]

Susie, Omnicef with probenecid (keeps it in the blood longer), or another one from that class of drugs.

That can be taken with a macrolide (zith and biaxin) because the macrolide goes after another form of the bacteria.

Plus, Plaquenil, which makes the macrolide work better and goes after the cyst (dormant) form.

I would recommend printing out Dr. B's guidelines because it has a comprehensive list of what meds are good. The above is just an example of how my own treatment has gone.

Lyme is resistant, needs combinations of various abx, and the abx combos need to be changed around. You might want to keep seeing your PCP, but also see an LLMD every few months so that you have someone with experience helping with your case.

Your PCP might also be willing to join ILADS and learn so much more about treating Lyme.

You might want to get a copy of Under Our Skin (www.underourskin.com). It's REALLY good. In the movie they show a doctor saying a woman's gut problems are due to the Lyme weakening her immune system and parasites taking over in her intestines because of the weakened state of the immune system. That rang a few bells for me .... I have seen expelled parasites as I have gotten better. Ewww. Gluten problems are talked about on Lymenet quite frequently.

[symptomax]

CarlaB - Thank you much for your post over on my symptoms thread. I am looking at Lyme as a possible culprit now. I made another post over here Open Original Shared Link

Thank you very much for giving me a lead, and taking the energy to post. I have been just trudging on for so long, feeling almost like I just need to "be stronger" and deal with my problems. Its good to find people that care here.

[mftnchn]

Symptomax,

I read your symptom post and agree that it is important to look into lyme or some other type of infection. Also it couldn't hurt to do a longer gluten free trial as someone else suggested.

For many of us, that answers are complex. This forum has been a great place for me to find ideas to pursue.

Another area for me has been nutrient deficiencies--we can't expect our bodies to work well when they don't have the nutrients needed. If we aren't absorbing that is another problem.

Vitamin D is proving to be a key for me; you might ask to have your levels checked.

I read something on a chronic fatigue website, I think it was the Zero-based protocol website, where they talked about a blood (clotting?) issue but I don't remember the name. I've read about the hemachromatosis but can't remember if that was what I saw mentioned there. Apparently with this issue, when people got infected they had trouble clearing the infections from their systems. If you find this website, look for the place where they tell their family's story.

Sherry

[Green12]

Got this in an email, I don't know what it means but I thought I should pass it along:

"This from Dr. Steere

Antigens of Borrella burgdorferi Recognized during Lyme Disease

Appearance of a New Immunoglobulin M Response and Expansion of the

Immunoglobulin G Response Late in the Illness

Joseph E. Craft, Duncan K. Fischer, Grant T. Shimamoto, and Allen C. Steere

Departments of Internal Medicine and Molecular Biophysics and Biochemistry,

Yale University School ofMedicine, New Haven, Connecticut 06510

Abstract

Using immunoblots, we identified proteins of Borrelia burgdorferi

bound by IgM and IgG antibodies during Lyme disease. In 12

patients with early disease alone, both the IgM and IgG responses

were restricted primarily to a 41-kD antigen. This limited response

disappeared within several months. In contrast, among

six patients with prolonged illness, the IgM response to the 41-

kD protein sometimes persisted for months to years, and late in

the illness during arthritis, a new IgM response sometimes developed

to a 34-kD component of the organism. The IgG response

in these patients appeared in a characteristic sequential pattern

over months to years to as many as 11 spirochetal antigens. The

appearance of a new IgM response and the expansion of the IgG

response late in the illness, and the lack of such responses in

patients with early disease alone, suggest that B. burgdorferi

remains alive throughout the illness."

[Rachel--24]

Julie,

It basically means that the IgM can be positive not only in early Lyme....but late Lyme as well.

Typically, IgM antibodies are the first to appear in the early stages of infection (of any type)...shortly after that the immune system stops producing IgM and the IgG antibodies will take over. After that the IgM antibodies do not recur. Thats how it is with any type of chronic infection.

However, with Lyme...the IgM antibodies can persist...even after years of infection. The fact that IgM can remain positive long after the early stage of infection indicates that the bacteria is able to constantly "renew" itself. The persistent IgM antibodies may reflect the ongoing "reactivation" of the infection.

So, unlike other infectious diseases....a positive IgM in Lyme testing does not indicate early infection only. Lots of people with late stage Lyme will have positive IgM.

[CarlaB]

CarlaB - Thank you much for your post over on my symptoms thread. I am looking at Lyme as a possible culprit now. I made another post over here Open Original Shared Link

Thank you very much for giving me a lead, and taking the energy to post. I have been just trudging on for so long, feeling almost like I just need to "be stronger" and deal with my problems. Its good to find people that care here.

I'm happy to help.

Your facial symptom could be bell's palsy, which is a classic Lyme symptom. I also was exposed as a child and had symptoms I could manage for most of my life. At times it would get to be too much to handle.

With your history, your number of symptoms, etc. I would look for an LLMD for a diagnosis and treatment.

Please keep us posted.

[souzahanson]

I'm waiting for my lab req from IgeneX and should get it Monday or Tuesday. I lived in Maine for the summer of 2004. I now live in western Colorado. I started having many of the symptoms listed for Lyme soon after getting here. It wasn't till the last 6 weeks that I have developed debilitating joint pain and was placed on prednisone. I now know prednisone is contraindicated, but what can I do till I receive my results? I tried to come off the steroid a few days ago which landed me in the emergency room. We have no LLMDs in our area. I already had planned a trip back to Maine(my home state) to visit family on 7/17/08. I have noticed several LLMDs in that area and thought I could schedule an appointment while in Maine. I would probably end up going to a closer LLMD down the road. I can almost say 99.99% I have Lyme, although I don't remember my tick bite. I can't afford to be off work too long. So how should I proceed? Any suggestions would be appreciated.

I NEED TO GET BETTER I FEEL LIKE I'M GOING TO DIE NEARLY EVERYDAY LATELY.