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03/20/2012 07:36 PM

Just wondering...

sleepy20520
Posts: 9
New Member

So i am still waiting to have my lab tests done so i havent tech been diagnosed with Lyme, altho my dr says shes pretty sure thats what it is.

Does anyone ever wonder if one (or all) of their symptoms arent lyme and maybe something else? I think this alot and it drives me nuts wondering... just wondering if im the only one. Like the worst is this shortness of breath and cough ive had, it seems to be getting worse lately. Im not overweight so i cant help but wonder, maybe its not the lyme and theres something seriously wrong why im so short of breath =/

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03/20/2012 11:18 PM
lyme99
Posts: 42
Member

Hi Sleepy!!!

You are definitely not the only one!!!! I wonder if my symptoms are the result of some other undiagnosed illness ALL THE TIME! My LLMD has suggested that I see a GI (it is hard for me to swallow, my throat feels like it 60% closed) and Ophthalmologist (I have floaters that started this summer) just to be sure that nothing else is going on and that all of my symptoms are truly Lyme related. I will also be seeing a Rheumatologist.

I constantly wonder if my symptoms are related to something else, but I have had dozens of tests done at this point and so far everything has come back normal. Try not to worry and get caught up in the what ifs. Sometimes I still cannot believe that Lyme is causing all of my symptoms, but from what I read on this forum Lyme can do just about anything!! Hang in there and take it a day at a timeSmile

99

Post edited by: lyme99, at: 03/20/2012 11:19 PM


03/21/2012 04:39 AM
mowgli
mowgli  
Posts: 442
Member

Yes, we do doubt because there are no definitive tests and this disease mimics just about every other disease out there!

To be cautious an LLMD will have you verify something else isn't being overlooked, but honestly it's mostly the Lyme and co-infections that are so numerous (parasites, yeast, etc.)

That is Lyme, when you have all these crazy things going on at once.

The key I think is getting the right treatment for all the co-infections and it helps to be treated in the right sequence.

I have very unique GI symptoms (at least I think I do) but I am seeking out doctors who are tuned into these symptoms and may be traveling from NY to California to see one, even though some of the best LLMD's are on the East coast and evn in NY, so I'm told. If there is one who is in expert in my unique set of symptoms here, I haven't located them yet.

I listen to my Lyme intuition now during moments of clarity, to decide the treatment I need.

Post edited by: mowgli, at: 03/21/2012 08:31 AM


03/22/2012 06:15 PM
WiscLamLymie
WiscLamLymie  
Posts: 1472
Group Leader

Hi guys, A few things to think about...

Floaters is a sure sign of Bartonella.

A cough and air hunger/shortness of breath can be telltale Babesia.

These are co-infections of Lyme, and if you haven't thought about the possibility of co-infx, please do. It is so rare that any tick simply carries Bb (Borrelia burgdorferi) anymore. They are cesspools of scum-sucking bacteria, viruses, parasites, etc.

Sleepy, I know you haven't posted much, so if you haven't seen my welcome letter, please read. If you have, I apologize. It's hard to keep everyone straight with as busy of a place as this. But I do care, so I want to put it out to you!! Smile So below is a bunch of very useful start-up info. All the best!

Welcome! We are so glad you are on the right path! And that you found us here as well.

We will always be a support for you, even if no one else knows what you're going through... we do. And we will lend a hand or a hug anytime we can.

Ask your questions!

LLMD

If you don't have a Lyme Literate Medical Doctor or Natural Doctor (LLMD/LLND) please go to the Doctor Request forum on this site (look at the top tabs) and request a LLMD in your area. Betty will PM you with info.

Bb=Lyme Bacteria

I also want to express my opinion and the opinion of nearly every Lyme doctor out there. The reason you need multiple antibiotics (abx for short) is because the Lyme bacteria is unique and stealth in its makeup.

It is a corkscrew shape, which is called a spirochete. It also can take other forms, the most prominent being the cyst form.

The Bb (short for Borrelia burgdorfei/the Lyme bacteria) gets hit with abx and it quickly goes into cyst form, thus not allowing the abx to eradicate them. This is one reason for other forms of abx, known as cyst-busters.

This has all been researched and documented. You can find YouTube videos to watch a spirochete go into cyst form within a few seconds.

They also form biofilms, which is like a fortified, protected city of loads of Bb and even other bugs, where traditional abx can't hit them.

Here is one: http://www.youtube.com/watch?v=lVmCa70bAxE

What happens most of the time when people are dx'd (diagnosed) with Lyme by doctors other than LLMDs is that they kill a few Bb, and the rest are driven into cyst form.

The patient feels better after a short cycle of abx, and they feel they are cured. Only to discover that when they come off the abx, they begin to relapse.

Under Our Skin

Please, if you haven't yet, watch the documentary, Under Our Skin. You can find it on Netflix instant streaming or hulu.com for free.

It explains a lot of the reasoning for the plight of the Lyme patient. Very eye-opening.

DIET

Another thing to think about is your diet. I understand that some people eat whatever they want and feel it is ok, but there are serious reasons why a NO SUGAR diet is important.

1. When you are on abx for any period of time, you are wiping out all the good bacteria in your gut. This can lead to a problem that many Lymies have: Candida problems (yeast!) It can overtake your gut and then it causes more problems.

2. Bb thrive on sugar. And whether you feel good or bad after eating it, this is their main source and most easily-attainable energy source. Not feeding them is important.

Also, many people with Lyme are not able to tolerate gluten and/or dairy. This is different for many, but you may want to consider cutting these things out for a minimum of two weeks to see how you feel without them.

Then, try introducing these types of things, ONE AT A TIME, to see if you react or feel poorly after eating them.

You can do this!

Please understand that you are brand new to this illness, and there are many people who are willing to help and offer advice and such. We all have the same goal: wellness.

Try not to be overwhelmed. We have all been there.

Pro-biotics

Make sure you are taking a really strong pro-biotic (pro-bx), two to three hours after each abx dose as this will help to keep your intestinal system (gut) in balance and keep the yeasties under better control.

And we're talking in the 20-40 billion a day range (some take even more!), different strains are a good thing, too. I always load up when I find the good ones on sale. Best idea as they are expensive.

Florajen is a popular one. You can find it at Walgreens at the pharmacy. No prescription needed, but it's kept there in the fridge.

DETOXING

There is also the issue of detoxing regularly. Bb give off neurotoxins throughout their lives. When they are killed, they release everything in them, called endotoxins.

It's like a tiny atomic bomb going off every time one of them dies. These neurotoxins are one of the reasons we feel so sick. Nausea, headache, and flu-like symptoms are just a few ways we feel these endotoxins.

So when you kill them, you are bound to feel worse. This is called a Herxheimer reaction (or herx for short).

It was named from the guy who discovered it, which is why it's kind of a weird name. 

Detoxing is of utmost importance.

1.Epsom Salt baths are by far the most widely-used detox regimen. 2 C ES in the bath water. Soak for 20-30 minutes. It brings the toxins out of your body through your pores.

I also put 2 T freshly grated ginger in a tea ball and put that in the bath too, as ginger helps open the pores and increase blood flow. So more toxins can get the heck out. 

2. Drink water (lots!!!) with freshly squeezed lemon . Lemon also is a terrific detoxifier.

3. Take Milk thistle and Dandelion (comes in a capsule form, many times together in the same pill) every single day. This detoxes the liver, which is on overtime, with the meds and Bb and trying to keep the body's toxicity level in check.

A stressed liver is not good. So taking this every day is EXTREMELY important.

4. Taking Chlorophyll or Chlorella (the kind with broken cell walls) is also very important. It binds to the toxins that can be moving around in there, and ushers them out of your body.

If there isn't a good binder like this, once the toxins are in the intestines, they can be re-absorbed which won't help anything at all. I order mine from Swanson's.

5. Burbur is an all-over body de-toxifier. I got mine from NutraMedix/Natural Healthy Concepts online.

Co-Infx

One last thing I want to tell you about here (I know this is a LOT of info, but these things I can't stress enough if you desire to be well). This would be co-infections (co-infx).

There are dozens of other bacteria/parasites/viruses that Lyme vectors (such as ticks) can carry, and many times, do carry. This is another reason why finding a LLMD is so important. They know about these things.

And sometimes when Lyme is being treated by itself, a patient doesn't get better because they have co-infx that are keeping them from healing.

Some of these are worse then the Lyme itself. I personally am fighting one called Babesia, which is a blood-born parasite.

The combo between Babs and Bb has given my a heart condition. Babs is also notorious for migraines, frontal headaches, heart palpitations, low-grade fevers, and many other things.

I also have Bartonella. This one can present itself with skin rashes/lesions that look red or white, and can look like a stretch mark or other form.

Painful bottoms of the feet, especially in the morning, low back pain, hip pain, severe thigh pain, low fevers, back of the head headaches, painful, stiff, sore, cracking neck...

There is also Ehrlichia, Anaplasma, Chlamydia Pneumonia, Mycoplasma, Rocky Mountain Spotted Fever, Relapsing Fever, and so many more!

Check out this link from a great website to read more on co-infx. http://www.lymedisease.org/lyme101/coinfections/ other_tick_diseases.html

I don't wish to sound "doomsday" about this, and it's not my goal to freak anyone out, but I also want to convey the severity of Lyme and it's co-infx (Lyme + Co.).

If left un- or under-treated, Lyme has been proven to lead to other debilitating things in some people, such as MS, ALS, CFS, Fibromyalgia, Alzheimer's, Lupus, and more.

This is definitely a huge reason you want a good LLMD on your side for. You can also visit www.ilads.org to learn so much more about the truth regarding Lyme Disease.

Also, please click here http://www.ilads.org/files/burrascano_0905.pdf to find an amazing paper--in its 15th edition--by Dr. Joe Burrascano, who is a true Lyme hero. (If you watch Under Our Skin, you will see him in there!) 

This paper, while LONG, is SO CRUCIAL to any Lyme patient. It's like a survival guide. It is a must read for all of us.

It explains, from a doctor's point of view, but in terms that are understood by the general public, the reasons for proper diet, different medications, and more, more, more.

I want everyone I ever meet to understand the truth about this disease. It has taken so many lives unnecessarily and severely reduced the quality of exponentially more.

I am here to do my best at offering facts and things I've learned over the course of my journey. PM me anytime. And make sure you read Burrascano's paper. I printed a copy off to keep with me, because it's so critical.

Blessings to you, and wellness!

Lauren


03/22/2012 07:49 PM
jileha
 
Posts: 205
Member

At least for the time being, I'm actually past that stage. I have been hunting for the right diagnosis for years, getting my hopes up with several plausible theories, just to have them crushed again. So, when I started my Lyme/Bart treatment,

I was very worried the diagnosis would be incorrect or that other things might be going on at the same time. Even after the tests confirmed at least the Bart infection - Lyme was inconclusive,

but I guess that's not unusual with long-term infections -, I remained somewhat skeptical. My first Herx reactions, though, which really increased my Bart symptoms, convinced me.

I just recently mentioned my chest pain, which acts up during herxes, to my doctor, wondering whether I should have my heart checked out. She just said not to worry, doctors usually don't find any heart problems with Lyme patients.

She then added, I think just for my peace of mind, that I could have it checked out, if I wanted.

By now, more or less the opposite is true: It seems to me that pretty much every kind of recurring symptom I have had through my life has been caused by Bart and Lyme.

All the many individual, seemingly unrelated pieces, where my regular doctors didn't know what to make of them (muscle weakness, knots in the back of my leg) or considered them "normal" and nothing to worry about (dyslexic episodes, brain fog, floaters, red spots and skin flaps, cramps...), seem to be falling into place.

I'm still at the beginning of my treatment, still slowly adding more weapons to my arsenal and therefore frequently under the weather from herxing and doses of ABx that need to be adjusted,

so I can't really say yet whether I'm improving or it's just wishful thinking. But I'm very optimistic. Watch out, little suckers, here I come! Smile


03/22/2012 08:34 PM
WiscLamLymie
WiscLamLymie  
Posts: 1472
Group Leader

Great attitude to have Jileha! It is hard to get through, AND to realize--for people like us, who have been infected a long time--that all those little things we went through growing up, could have been avoided had we known it was Lyme.

I'm going on 29 years of my 36 year life with at least Bart, if not Lyme as well. And 4 years ago got reinfected... welcome Babesia too.

One thing you could read up on: Autonomic Dysfunction. This is something Lyme causes. I am diagnosed with this, along with POTS (a tachycardia condition), but am praying and very hopeful that these things will be corrected when I win this Lyme + Co. battle!!

Fighting the fight,

Lauren


03/24/2012 10:52 AM
greenespace
greenespace  
Posts: 137
Member

I can't tell you how many times I've wondered if it's not something else that they've somehow overlooked. Probably everyday I question if it could be something else. I've considered going back to my regular MD and having more tests done, although my CBC and several other tests came back showing me perfectly healthy.

I can assure you, I wasn't and I'm still not.

That said, I had a low CD-57 (33) and was reactive for bands 23, 39 and 41, and once I started abx, felt 100% better, so maybe it is.

I can tell you one thing for sure- Lyme will mess with your head something awful. Everything from depression to anxiety to anger to brain-fog to ADD- it's just not right what this does, so know that some of what you are experiencing could be Lyme's impact on your brain.

Good luck, I hope you are doing better!


03/24/2012 12:15 PM
jileha
 
Posts: 205
Member

I can tell you one thing for sure- Lyme will mess with your head something awful. Everything from depression to anxiety to anger to brain-fog to ADD- it's just not right what this does, so know that some of what you are experiencing could be Lyme's impact on your brain.

That's an important point. Before I started hormone treatment for my adrenal fatigue, I had no idea how much out-of-whack hormone levels can impact your entire world view.

I always thought that - given my condition - any kind of depression, worries and anxiety were simply natural and understandable, almost a logical consequence. However, there are plenty of physiological reasons for that.

I take GABA on a regular basis. Since by now my GABA levels are actually at the high end, I often cut the dose in half for a while. Then, after a couple of months, I can feel my anxiety come back.

E.g. I wake up in the morning already with that sinking feeling in my stomach and the question: How am I going to make it through the day? At my worst times, this was a very understandable feeling, but I'm doing comparatively well at the moment, so there's no reason to feel this way.

Ergo, I increase my GABA dose again and I know I will have a much more optimistic outlook and won't really worry too much - which, I am sure, will also help my immune system.

Post edited by: jileha, at: 03/24/2012 12:16 PM


03/24/2012 12:20 PM
ontong
ontongPosts: 269
Member

hi folks. Yes, I feel this way also. I sometimes wonder if Im just bringing these symptoms on myself somehow. Then I will have a really bad day, and I will realize there is no way that I could "create" these symptoms.

www.canlyme.com has a great symptoms list. When Im in doubt, I take a look at that list and reconfirm what Im experiencing.


03/24/2012 04:16 PM
Courious
 
Posts: 708
Member

I've been reading "Mold Warriors" by Dr. Shoemaker.

He goes to great pains to explain the processes which slowly shut down out normal body functions....

I don't doubt that lyme illness is involved. But I know that my body is not functioning properly to help me fight these bugs.

I know I have bad fungal problems which cause the same biotoxin illness.

Whichever started this painful journey. I have to treat them all. I just hope my doc is smart enough to know how to do this. Because, I'm lost.

Good news though. After being on A-L Complex... My neck is improved some..

this is a twenty year problem. So.... Yay! Hope it lasts.

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