I would love some feedback. How do you know what to blame on Lyme can Co. And what is just.... Getting older, allergies, depression, etc.
It seems like a lot of the books I have read seem to say we would be perfect beings if only we didn't have Lyme. I know I have felt worse since abx. But when do you say this is just how it is?
Part of me wants to get off the abx cause, when I thought it was fibro, I had few expectations. Now i believe if i can just be in enough pain, i will come out the other side better than ever. I also rarely felt this bad before abx.
So, would rally love to hear how all of you figure out what is a symptom, what needs a different sort of medical attention, and what just is?
Thank you all in advance for sharing.
Posted by James1979 (Member # 31926) on :
It is definitely complicated to try to figure out what is causing the symptoms.
Of course there are MANY other factors besides Lyme&Co that can be causing our symptoms. I think a person has to be constantly watchful and keep good notes in order to try to discern the causes of different symptoms.
For example, it's very common (after taking long-term abx), for Candida to sometimes become worse than the original Lyme infection(s). We have to be aware that maybe it's the yeast which is now causing our symptoms, and this would require a different approach.
Another common cause: the antibiotics themselves (or any other medicines/supplements we are taking). Each antibiotic has it's own list of side-effects, and we should be aware of these. We shouldn't blame all of these side-effects on Lyme.
There are many other common causes of things that can cause symptoms which we might confuse with Lyme symptoms. It think it's wrong to blame everything on Lyme, but also it can be very difficult to discern what is causing our symptoms.
Posted by Dogsandcats (Member # 28544) on :
I understand your dilemma...I have another condition and sometimes I can't figure if one is causing the other to be worse or if it is one by itself.
Part of what I do is to try to find out about both issues as much as i can without making myself neurotic.
I pray and trust God to guide me and be very attentive to my instincts. If it seems wrong, it probably is.
Take care ~
Posted by TF (Member # 14183) on :
If you start getting new symptoms shortly after starting a new med, think medication side effects. Check the package insert and on the web to see if your med could be causing the new symptoms. Then, check the list of lyme symptoms to see if lyme can also cause the symptom.
When I was treating, the first time this happened to me, I called the doctor's office because the new symptoms were so bad. The doctor laughed and said I was suffering side effects from Biaxin and to stop the biaxin. (Good thing, it gave me total insomnia, anorexia--meaning I couldn't eat even a spoonful of food in an entire day--,and anxiety.)
After that experience, I learned to think side effects first. Same thing if you get hives after starting a new med.
If it is not medication side effects, new symptoms are almost always going to be lyme or coinfection symptoms brought on by the treatment.
I tell people that a person with lyme can run around to all kinds of specialists and spend a lot of money and get no answers. So, I think that the best course is to treat lyme and cos and when you are done, if you have any symptoms left (at the end of treatment), THEN go to other doctors to determine the cause. Usually, you are symptom-free at the end of treatment.
Almost always, all of our symptoms during treaetment are related to lyme and coinfections.
Inability to detox the medications can make a person have "allergic" reactions to many things--foods, meds, etc. You can get hives a lot. You can have bad reactions to foods. So, you also have to learn the signs of inability to detox.
Like it or not, you have to learn a lot to be able to figure out what is going on with you when treating lyme disease.
You definitely have to learn the signs of a yeast infection in mouth and intestines, because this is often a side effect of treatment. Once you learn the signs, you will be able to separate out the yeast symptoms from the lyme symptoms. And, you will know you need to call the doctor for yeast treatment.
So, it pays to study these things--lyme and coinfection symptoms, med side effects, signs of yeast infection, and signs of need to detoxify. Then, you can usually figure out what is going on.
Any mental symptoms I would blame on lyme and company. That includes depression and anxiety. But, remember that these can also be medication side effects, especially depression while taking Mepron.
And, I would forget "getting older." This is generally not going to cause any symptoms. The getting older symptoms are lyme and company until proven otherwise. That includes menopause-type symptoms and peri-menopause symptoms. Lyme causes them in a lot of us.
Of course, if you DO have other medical conditions (such as diabetes, for example) that you had before you even got sick with lyme, you probably know the symptoms of these and you should continue treating these while treating lyme.
Hope this helps you. Study, study, study.
Posted by Kudzuslipper (Member # 31915) on :
TF. Thank you. That was incredibly helpful and well written. My ailments before Lyme, were allergies to everything (100 foods tested...only 5 I was not responsive too,not to mention all grasses, molds,and dust). And fibromyalgia. The fibro is actually better on abx. But the pain has moved to my joints.
Where can I find info on signs that you are not detoxing?
How do I know if it is yeast?(other than thrush or vaginal)?
Could you recommend some books?
I am trying to learn from here and the web...but it's like. I am coming in in the middle and don't really understand a lot that a read online.
Your help is truly appreciated.
Posted by Mindy159 (Member # 31149) on :
What would we all do without TF? She is so knowledgeable and saves us sooooooooooooo much time.
Thank you TF, you rock (you're a kind soul)!
Posted by TF (Member # 14183) on :
Kudz, your fibro is almost certainly caused by lyme disease. So, you can expect all of those fibro symptoms to go away with treatment.
It is very possible that your "allergies to everything" are also caused by lyme. The body can be so overwhelmed by the diseases (lyme and coinfections), that it begins having allergic-type reactions to everything. In other words, the immune system goes on high alert and even treats what you eat as a germ.
It takes a long time to realize how long you have probably been sick with lyme. The more I learned, the further back I could see my illness. I have concluded that I likely had lyme at least 10 years before I was diagnosed.
I never had a problem detoxing. So, I am no expert on it. But, I have 2 friends who seemed not to be able to detox. The key to figuring this out is that these folks have a terrible time with lyme treatment.
I didn't. I got herxes shortly after starting new meds. The herx could last a week. Then, I was back to normal. But, with folks who can't detox, they don't see the short herx. They just are sick all the time they take medications.
They go through a living hell trying to get rid of these diseases. One friend was "allergic" to all but 5 simple foods by the time she completed her lyme and coinfection treatment. Her lyme doctor figured out near the end of treatment that she could not detox.
(At the conclusion of her treatment, she went to a detox expert and was thoroughly detoxed in 2 months and then felt great. He was an ayervedic practitioner.)
An experienced lyme doctor will figure out when a person can't detox because of the monthly reports the patient gives. There won't be clear 4-week lyme flares. There won't be clear herx periods. Some folks will get terribly sick within a week of starting medications. This will happen each time they try to treat.
Here is an article that gives some of the symptoms of inability to detox and also tells about the genetic test to find out if you are one of the ones who can't detox.
"In Lyme disease, MMP9 levels may skyrocket as the result of treatment with antibiotics and the resulting bacterial die-off in what is commonly referred to as a Herxheimer reaction. Taking this even further, if you give a Lyme-infected person antibiotics and they are not HLA-susceptible, they generally have an uneventful recovery."
I had lots of times of feeling horrible during treatment, but I progressively got better and better. So, I guess you could say that I "generally had an uneventful recovery."
If you find yourself struggling continually through treatment, then it is time to consider the possibility that you can't detox.
For me, just drinking lots of lemon water (fresh lemons squeezed into water--it was my one and only drink during treatment; doc said to eat 4 per day), and sometimes taking epsom salts baths were enough for me to struggle through the tough times. I could predict my 28 day lyme cycle and mark the day in advance on the calendar ("BAD DAY") and arrange my schedule accordingly. I worked throughout my treatment, but I missed a lot of time at first. I had weekly (like clock-work) babs flares when treating babs. And, I got a lot of hives during my years of having lyme. That was it.
Regarding yeast, Lymetoo is the expert with the long list of symptoms. I would know I had yeast because I would get the white tongue and, if left untreated, I would then get terrible painful bloating to where I could not fit into any of my clothes. Taking diflucan would get rid of it in about 5 days.
To avoid getting yeast, I stayed strictly on the anti-yeast diet found in Burrascano. Basically, I ate only meat and non-starchy vegetables. I didn't eat anything with sugar, no fruit, no flour, no bread, no pasta, no potatoes, etc. I ate quinoa porridge for breakfast.
If I ever broke the diet, I immediately got yeast and I would have the white tongue and bloated, sore abdomen. Then, I would have to get a prescription for diflucan from my doctor. He didn't hand these out lightly to folks like some lyme doctors do. He really expected you to follow the diet strictly. You had to report what you had eaten (bad patient) before he would call in some diflucan--and only enough for 5 days!
Give yourself a year to really learn and understand this stuff. And, the symptoms of lyme, yeast, and inability to detox will overlap. So, you figure it out by seeing patterns.
I could see the relation of eating a bite of a brownie and getting the white tongue and bloat within the next 2 days.
I could see with my 2 friends that all they did was suffer throughout lyme treatment. Their response was not like mine. Rarely any good news, and none that lasted. So, that is the sign of inability to detox.
I don't have any books to recommend. My recommendations are:
Read and STUDY the Burrascano Lyme Treatment Guidelines; and
Get yourself a doctor who follows the Burrascano Guidelines.
The doc is the key to getting rid of this disease. It is a very complex disease, so get one with as much expertise as possible. It likely takes 10 years of being a lyme doc to get to the right level of expertise to be able to get rid of this disease for many folks.
The doc is the key to getting rid of this disease. Can't stress that enough. Many doctors treat lyme disease, but only a few know enough to get rid of it for a person.
You want a doctor who knows yeast infections, how to diagnose coinfections, how to recognize the patient that can't detox, and how to treat lyme and coinfections simultaneously. It should not take years and years to get rid of this disease with an expert doctor. (Generally speaking. There are always exceptions.)
You must be a totally compliant patient. Totally!!
From page 17 of Burrascano:
"There are three things that will predict treatment failure regardless of which regimen is chosen: Noncompliance, alcohol use, and sleep deprivation. Advise them to take a break when (or ideally before) the inevitable mid afternoon fatigue sets in (napping is encouraged)."
And:
"CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY CLEARED: 1. Not allowed to get behind in sleep, or become overtired. 2. No caffeine or other stimulants that may affect depth or duration of sleep, or reduce or eliminate naps. 3. Absolutely no alcohol! 4. No smoking at all. 5. Aggressive exercises are required and should be initiated as soon as possible. 6. Diet must contain generous quantities of high quality protein and be high in fiber and low in fat and carbohydrates- no simple carbohydrates are allowed. Instead, use those with low glycemic index. 7. Certain key nutritional supplements should be added. 8. COMPLIANCE (page 27 of Burrascano)
And, never, ever, ever let any doctor give you steroids unless it is a life and death matter. Read about it in Burrascano.
Notice that the Burrascano protocol is a 4-pronged approach:
antibiotics supplements diet exercise (weight lifting for one hour every other day)
It takes all 4 to achieve wellness. The exercise is a necessity, so don't overlook it. It must be the specific type Burrascano recommends in order to boost your immune system. If you don't do this, you can just relapse each time you stop treatment.
Well, I guess that is my "Short Course on Lyme Disease" for today. Hope it helps you get through all of the confusion that reigns when you first land in Lyme Land.
Posted by Keebler (Member # 12673) on :
- In addition to the excellent posts above . . .
Remember that, if lyme is ignored, it's not going to just disappear back into the misdiagnosis of "fibromyalgia" but also likely get worse.
As to candida from abx treatment, in many cases, candida that results from antibiotic use can be avoided if the proper precautions are taken before that first pill is taken.
In addition no sugar or additives, & probiotics (away from abx), there are various antifungal herbs that can help. Olive Leaf Extract is just one of those with Seagate brand and Myrolea-B by White Tiger being the ones that were very effective for me. At times, Nystatin or Diflucan may need to be used.
Still, aside from side effects and herxheimer reaction which is not to be sneezed at - lyme DOES cause much torture. Every body system can be affected.
Also, remember that the herxheimer reaction can also be somewhat mitigated by specific support herbs and detox methods - but also just education so as not to be shocked by the fact that treating lyme is absolutely no walk in the park.
Liver Support, Adrenal Support, and other nutritional supports are really required to make it through. As TF explains with detox.
Lyme treatment usually does not make someone feel better for quite some time. And, during that time of feeling awful, we still must maintain a near perfect job of self-care regarding nutrition (food and vitamins, etc.), just the right kind and amount of exercise, & rest. And still function as normal? Hah !
We have to expect that each minute can never be predicted. We have to listen to our body every step of the way. We'd all rather be doing other things with our life, I know.
But our bodies are being asked to tackle a tremendous effort and it's just going to be rough for a while and we have to be very vigilant, always.
But to think symptoms are just "getting older" can really put us as risk of ignoring the elephant in the room.
Lyme - and the other tick-borne infections AND other chronic stealth infections - that often tag along with lyme (or may be independent of it) CAN and DO cause a lot of symptoms and misery that most doctors just want to put off as "normal aches and pains of everyday life."
This is the single most important article I've read. It explains SO much: -------------
When To Suspect Lyme Disease - by John D. Bleiweiss, M.D.
This essay, written in April, 1994 is very long, but also very comprehensive. It's a tremendously valuable article. Since written, some have commented that he may have also been observing the impact of layers of coinfections that were not well understood in 1994. But, now, we all understand that when we talk about lyme, it's rarely ever just one nasty infection alone.
The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, and Heart Disease � by Russell Farris and Per Marin, M.D., Ph.D.
[the authors highlight several examples related to chronic Lyme and the chronic stealth infection, Cpn (Chlamydia Pneumonia) are shown here to have tremendous impacts that most patients and doctors might not even consider.]
==============================
In addition to lyme - or maybe also "instead of" lyme, other chronic stealth infections that can have a similar devastating impact are discussed here:
I would encourage EVERY person who has received a Lyme diagnosis to get the following tests.
=============================
Parasites (which travel in the tick with lyme), Heavy Metals, Food & Environmental sensitivities, and Mold issues are also important to address so that treatment can be more comprehensive and effective. Most LLMDs cover all those bases. -
[ 10-10-2011, 02:44 PM: Message edited by: Keebler ]
Posted by disturbedme (Member # 12346) on :
Of course most of us, after finding out we have lyme, are very stuck on everything being lyme's fault and every little new symptom is lyme. I was like that too. I was very 'it's all lyme's fault and lyme is causing this and this and this and this for me.'
I was very, very sick when I first fell ill in 2007. Suffered for over three years (though I'd still say I'm suffering; just not as much). Had such a hard time with SOOOOO many symptoms. I had over 100 symptoms. Many days I felt like I was going to keel over. I was so afraid many times that I would die. I was that sick.
But then after 3 years of mostly continuous abx treatment, I was getting better but still had bad days/weeks/months. Then I found out about other issues I have that caused major symptoms and problems. One of which was gluten intolerance. That caused a TON, and I mean a TON of symptoms that I thought previously were all the lyme's doing.
Most of my gluten intolerance symptoms were neurological and cognitive in nature. I did not and do not have bowel issues with my gluten intolerance (as most people think that is the only symptom of celiac or gluten intolerance; it definitely isn't).
Of course after going completely gluten free, I felt SO much better. A lot of the neurological problems got incredibly better (though not 100% but made such a huge noticable difference). And quickly too. I was amazed. It was one of the best things I've ever done for my health. I think most people with lyme and/or health issues have celiac or some degree of gluten intolerance. Wheat, in as large amounts as we eat them, are really not healthy for ANYONE.
Then I found out other health problems (most being autoimmune diseases) I have and have been treaing those. And who knows, I probably have more issues on top of that, that I don't know about yet. Our body and health is so extremely complicated. :\
Since finding out about the other issues I have and fixing those, I have felt so much better. I am still not 100%, but I'm definitely not stuck on the 'lyme diagnosis' anymore. I now think lyme is more in the background. It's still there -- as it always will be for most people -- but it's not causing major issues for me. Sometimes I think that lyme for most people are not the big issue even though they think it is. Most people have some sort of food intolerance (allergies are a big, big deal to our bodies). Most people have viruses. Most people have other issues they have no idea about.
I think it's counter intuitive for people to be so stuck on 'LYME LYME LYME'. But I do understand that it is a big deal for some people's health, but I think for most people, other things need to be checked. Everything needs to be ruled out. Everything you can think of. Do as much research as you can. That is what I did and I still do. It's your health. You need to be open-minded about not everything being lyme.
I think that especially after you've been on abx treatment for over a few years for lyme and co's, it's more likely to be other health issues on top of the lyme (and lyme being more in the background).
Posted by Kudzuslipper (Member # 31915) on :
TF, I got all teary when I read your post! It is so clear and concise and tells me what to do! I usually don't like to be told what to do LOL! But found this a relief! Of all I've read, Burruscano's guideline have made the most sense to me... But I wondered if it is just because it was the easiest to understand! Thank you for explaining the inability to detox thing.
Keebler, thank you for the advice on antifungals and links.
Disturbedme
Posted by Kudzuslipper (Member # 31915) on :
Oops... Posted to soon. Disturbedme, sound like you have a great handle on some very complicated and sucky conditions.
I am bookmarking this thread, and will be printing out all of yours advice.
One more question, is the last dr. B's guideline really from 2008?