[This message is too long for one reply, so I have broken it into two pieces]
[I pasted your entire email text into a new message window so I could respond to it fully, and then hit 'send' by mistake. I've asked the moderators to remove the erroneous message. The message below is a 'real' response.]
Welcome to MedHelp Lyme --
We're glad to share our experiences and understandings.
-- You ask, "Do I have Lyme? I was recently diagnosed by an LLMD". Seeing an LLMD is the gold standard in Lyme diagnosis, so this is good news on the whole.
Comment: Did you get copies of ALL your test results? I started a 3-ring binder for mine, and it came in handy to look back at and gain more perspective of where my illness had taken me and what I should keep an eye on.
That said, not all LLMDs are created equal. Some are better than others, and it's a fast-moving area of medicine. If at some point you are concerned about the quality of the doc's care/responses, then consider a second opinion just for peace of mind. If I did that, I would take with me the big ole 3-ring binder for the new doc to review.
-- "my case seems to be much more advanced than those around me (I haven't been able to work full-time for the past 4-years) and have also suffered from many of the symptoms above -- albeit much more mild -- for decades."
Comment: It is entirely possible that you have had Lyme for decades. Lyme is not a new disease, but is a recently rampant disease, partly due (so I have read) to the spread of ever more people and towns into what were formerly farms and orchards and wilderness. It's a lesson in epidemiology. Just as the deer (which are vectors of Lyme) are getting flushed out of the woods, so are the insects that carry Lyme. I personally have a friend who has had diagnosed Lyme for some 30 years.
-- "within the past 5-years I have been diagnosed with celiac disease, hashimoto's disease and some sort of autonomic dysfunction; curious whether those diseases could be related to Lyme?"
Comment: I am not medically trained, so I cannot say for certain, but Lyme is often confused with other diseases and can also bring symptoms that mimic other diseases. As far back as 1989, the 'Review of Infectious Diseases' published a piece on neurological manifestations of Lyme disease, calling it the "the new 'great imitator' " in homage to syphilis, a disease known to confuse diagnoses with a random array of symptoms.
It is true still, now, that MDs are often confused by Lyme and its co-infections (other 'bonus' diseases often carried by the Lyme ticks) because of the array of symptoms that may or may not be present.
-- "For years I tested negative on both ELISA and Western Blot tests."
Comment: First lesson for Lyme patients: ELISA and W.blot tests are not infallible. These tests rely on the reaction of the body's immune system to register a positive Lyme result, but Lyme often suppresses the immune system, so that the test results may be negative while the patient has a full-blown Lyme infection. There are other tests, used by Lyme specialists, which do not rely on the immune system reaction, but instead on looking for bits of Lyme bacteria DNA in the blood: PCR testing, short for polymerase chain reaction test.
-- "However, my wife mentioned the importance of band 23, which did show some activity on a recent Lyme test, which encouraged me to seek out an LLMD."
Comment: This is good. My LLMD was surprised that, as long as I had been ill, my immune system was, like yours, still registering an immune reaction, which after a while the immune system will cease to do even in the presence of Lyme bacteria, because the human immune system is not designed to deal with bacterial infections that persist and hide in areas of low blood flow, such as cartilage -- as Lyme does.
END PART ONE -- see next message
PART TWO -- continued from previous message
-- "She proceeded to send blood sample to IGENEX and results came back as follows:
IGENEX IGM: Positive
Abs CD8-CD57: 70 (60 - 360)
"So, with all of the positive results above, is it still possible that IGENEX produced a false positive in my case?"
Comment: There are only vanishingly small chances of that being the case, from my reading, because as mentioned above, IGeneX tests look for direct evidence of Lyme bacteria DNA in your blood, not for the (variable) immune system reaction as the W.blot and ELISA tests do.
-- "I just want to be sure...or at least as sure as I possibly can be. These past few years have been excruciatingly difficult. Plus, we have a 3-year old son that I need to be present for, physically, emotionally, and cognitively -- much of the worst symptoms coincided with his birth. I suspect that the energy and anxiety of that life changing event had some sort of impact on either activating Lyme or worsening existing symptoms."
Comment: You may be right, that your system was so overwhelmed by fighting the infection that the energy required and excitement resulting from your son's birth taxed your system's ability to cope, and Lyme knows an opportunity to make mischief when it sees one.
-- "The LLMD currently has me on 750mg of Zithromax, 750mg of Atovaquone-Proguanil, 200mg of Hydroxychloroquine and 5mg of Hydrocortisone for adrenal fatigue. And, unfortunately, I currently feel like complete crap. I wake-up a zombie, sleep walk through the day with horrible GI issues, brain fog, numb limbs, etc and collapse into bed in the evening for another round of unrefreshing sleep. Sorry to be so uplifiting. My wife says that I need the IV. The doc also mentioned intramuscular injections. Thoughts?"
Comment: Everyone's system reacts differently to Lyme, and your stamina also depending on the co-infections. You have babesia and mycoplasma, I see above. I had Lyme and babesia, and it was plenty to deal with. My LLMD treated my babesia first, then moved to treat the Lyme. It worked well. It then took me an additional year or two to get back my stamina.
There is not one fixed treatment program, because much depends on the co-infections and your particular body chemistry. Your LLMD may also switch things up depending on your response to various meds.
-- "I have done considerable research and the only other conditions/syndromes that could possibly account for the ever-expanding list of symptoms could be: chronic fatigue syndrome, unresolved hashimotos, mitochondrial disease and possibly MS."
Comment: CFS is sometimes thought to be a catch-all name for some other ailment ... like ... Lyme and/or its coinfections!
A syndrome is a collection of symptoms, not an identified illness.
Hashimoto's involves thyroid, I believe. Lyme often affects the endocrine system, thus including thryoid.
Mitochondrial disease I have not much read up on, but it's another area that Lyme may cause or mimic.
-- "Though, based on negative brain and spinal MRIs, MS is unlikely. Both came back negative. Big yay!"
Others here will have comments as well -- we each have different situations and infections and treatments, so there will be plenty of information and advise for you to consider.
All good wishes to you and your family --
I was just re-reading my previous posts to you (above) and saw something that needs to be noted, in response to your question about whether you REALLY have Lyme disease.
--- Here's the scoop about the CDC/NYS tests:
IGENEX IGM: Positive
CDC means Centers for Disease Control (which is THE national public health institute of the United States), and NYS means New York State (in this case, referring to its state-level health department). That's as high as you can get in govt health care expertise and authority.
Here's why that matters: the CDC and NYS are also as conservative as you can get when it comes to medical stuff, including infectious diseases, which includes Lyme. They have their own test protocols when it comes to Lyme disease, and these guys are not in business to be wild-eyed and shrieking about diseases: quite the opposite.
So look at your test results next to CDC/NYS: "positive". If you get a positive on a CDC/NYS Lyme test, dude, you've got Lyme.
----- Here's the scoop on IGeneX testing:
These guys are cutting-edge medicine, and are the gold standard among Lyme docs. IgeneX says 'you've got Lyme', and they're not kidding.
Bottom line: this is like getting your mother *and* your mother-in-law to agree on *everything* over Thanksgiving dinner.
You can't get any more positive for Lyme than that.
As to these additional test results:
---- Babesia: Positive
Babesia is similar to malaria. It's a whole different kind of infection from Lyme disease. I had it too, along with Lyme. It needs separate meds from Lyme, and my doc treated it first, then went on to treat the Lyme. It was not a big deal to treat, and it's a pretty straight shot to a cure. IIRC, it takes several months of one or two particular medicines, taken orally, one of mine was a liquid. No big deal, just take the meds.
---- Mycoplasma: Positive
This is one I didn't have and so am not very familiar with. But it means you've got one more infection that will be treated, maybe with meds completely different from the other infections.
---- Abs CD8-CD57: 70 (60 - 360)
I believe this is a measurement of your immune system. Some say that it helps the doc measure how active or inactive your immune system is. Yours looks pretty low, but you'll have to ask your doc what s/he uses that test to measure and what its significance is for your situation. I wouldn't lose any sleep over it.
====================End of lecture======================
Now go see your doc and get well! Believe me, it's worth it.
Let us know how it goes, okay?
I can't say it as well as, or any better than Jackie. The diagnosis of Lyme Disease seems to be blaring out at you!
Jackie's comment, "Bottom line: this is like getting your mother *and* your mother-in-law to agree on *everything* over Thanksgiving dinner. "- could not be said any better.....or wittier, lol but bang-on! Good luck to you and hope your health starts improving with proper treatment. If you LLMD suggested IM meds, I'd go for it personally!
Hi, I would of course say you have Lyme. I was also diagnosed with everything under the sun so know how you feel. I found out that Chronic Lyme can cause positive Hoshimotos, lupus, and other things. I have been treating the Lyme with my LLMD and finally in my 3rd year I am turning the corner.
My CD-57 was 8 5 months ago. I am testing it soon as I am feeling better but I have read that it is no longer used as a marker for Lyme.
You do indeed sound like a bad case of long term, late stage Lyme. It can slowly progress over time, eventually disabling the sufferer with miserable symptoms. The fact that you feel like crap on treatment is also very common. It's called "herxing," officially called a Herxheimer reaction to the bacterial die off. You might research detoxing options to help your body process everything.
Of all the things I've tried to feel better during treatment, the most useful have been Provigil (good stuff, even at 1/4 dose) and IV glutathione.
I've had chronic symptoms for 4 years and been too sick to work for 3 years. I've had many of the same symptoms you describe. I know exactly what it feels like to be a zombie and spend most of the day in bed. I'm just now coming out of a stage like that. The good news is that later, when you feel better, that time will mostly be a blur.
While I haven't suffered immune dysfunction, many long term Lyme patients do. I've read a lot of stories of chronic Lyme patients developing autoimmune disorders, some of which resolve after Lyme treatment. Treatment will not restore permanent damage, though, so you might still have thyroid isses after treating Lyme.
Some long term patients are helped exclusively by oral medications. From what I understand, my doctor tends to treat long term infections with IV meds because they bugs are so entrenched. IVs are just more effective.
Bicillin shots work for some people, and not for others. In some people, they help, but then stop helping. That's been the case for me. New meds work for me for a few months (except for one that was useless) but then stop helping. I've had to switch regularly and I've been through quite a few. Shots and IV meds have worked far better for me than oral meds.
My doc also tends to treat a patient for about 3 months with orals before going to IVs. The die off can make you miserable, requiring a reduced dose for a while or a pulsed regimen (a few days on, a few days off). I recently took a 3 1/2 week break from IV meds to let my body detox. It was about day 10 before I started feeling better. Now that I've resumed, I'm handling my new pulsed regimen much better.
False CDC positive Western Blots for Lyme are indeed rare. Given all your evidence of Lyme and Babesia and Mycoplasma, I'm actually surprised that you're doubting your diagnosis, especially when no one has any other explanations for you.
It is a myth that false positives are common. Five of the 10 bands on the IgG portion that the CDC looks at are shared with other pathogens. If you produced ONLY those 5 non-specific antibodies because you've had that exact combination of multiple other infections, and no Lyme specific antibodies on either the IgM or the IgG, then you MIGHT be a false positive.
If you want to share your IGeneX Western Blot results with us, we could give you some feedback on whether you have Lyme specific antibodies.
Babesia and Mycoplasma can also be debilitating. Both can cause severe fatigue. I just read about a chronic fatigue specialist who found a lot of his patients actually had mycoplasma infections.
I've had Bicillin shots, Rocephin shots, and a PICC line through which I've taken Invanz (brutal!), and now Zithromax and Ampicillin. I tolerated the Bicillin shots fairly well, but my husband had no qualms doing them for me. Later on, I did the Rocephin shots myself. After 4-5 months, I had too much scar tissue and had to stop. They were painful and brutal, and I think IV Rocephin is better than shots.
I found that Malarone made me feel like crummy. Wikipedia says long term use can make a patient feel "sullen." Hah. What an understatement. It was hard on my family, too. I felt emotionally better and less apathetic when I stopped it.
I recently started liquid Mepron, and I believe it's helping. It's given with Zithromax, which you're already on, so you might ask your LLMD about that. Maybe the Malarone is adding to your zombie feeling.
It's also possible that the fact of treating Babesia is adding to your misery. I've read extensive stories that Babesia makes you feel worse when you start killing it. I've even read of some patients who suffered from Babesia for many years because every time they tried to treat it they got too sick to function. That can last for months (8 months in my case) so it presents a difficult challenge for a breadwinner or someone who has to keep working to keep their insurance.
I don't mean to sound insensitive, but since you're already a zombie, I suggest continuing with Babesia treatment to get it over with. You can't get over Lyme as long as you still have Babesia.
If you feel truly awful, call your doc. I had one incident where a fibrin dissolving enzyme (Boluoke Lumbrokinase) triggered a nasty Babesia. My gut and spleen swelled up, my stomach hurt so bad I couldn't eat, my heart rate went up, and I had some scary bad breathing incidents.
My doc told me to stop all meds for 3 days and go for an ultrasound to check my spleen. (It had not ruptured.) The symptoms settled down after 3 days, but it was a month before I felt I was back to where I was before the new enzyme. I resumed it at a tiny dose, working up very slowly. For months, I felt every dose with worsened air hunger and bloating. I think my spleen was enlarged for a good 6 months.
I have found that IgG DF 2000 was the best supplement to help my distressed gut. I've had a ton GI symptoms over the last few years, so I am empathetic. It's important to address the gut, because stressed out intestines result in Leaky Gut, which results in a new set of problems for your body that can interfere with healing. It can lead to malabsorption, improper metabolism of medications, and nutritional deficiencies.
A complete GI analysis from Metametrix was very eye opening for me. It identified deficiencies that I was able to address with supplements and changing my diet. No gluten, no dairy, minimal sugar, no caffeine, no soda, no artificial sweeteners, and organic foods really did make a difference. After a year I was able to reintroduce some gluten and dairy with no discernable effects. Both are big inflammation triggers, so keeping them to a minimum is good once your gut has mostly recovered.
And LOTS of good probiotics. I currently take two high end refridgerated brands along with Florastor every day. They're not optional.
One more thought: Lyme patients with lots of neuro and/or GI symptoms often have Bartonella (which I have, too). You might read the article "Bell's Palsy of the Gut" to see if explains how these two infections work together to wreak havoc in the gut. I had the low acid, paralyzed intestines, abnormal stools, and several other symptoms described. Bartonella also causes numbness, especially in extremeties. Tests are often false negative.
Have you been tested for Bartonella yet? If they're negative, you could try some herbals for it to see if you have a response. My tingling and numbness in my hands as well as my blurry vision spot got noticeably worse about 3 days into A-Bart and another one called Bar-1.
You could also do the new culture test offered by Galaxy Labs. It's better than the antibody tests, which only look for 1 species. The culture can find several species.
I'm sure I've overloaded your brain. I'm glad you're getting treatment and I wish you great success! Your child deserves a healthy Dad! Hopefully you'll come back and read this again. Or even better, have your wife read it. She's more likely to remember what's in it. :)
I'll respond in greater detail shortly, but just wanted to thank y'all so, so much! It's really nice to know that there is a community of like-minded, compassionate people to help guide and support folks through the difficulties of Lyme disease!
Hi, great information. Where do we get these supplements for the gut, etc? I am having trouble processing all the info. I was positive sort of for Lyme (only one band on the w blot and 2 are required?) but that test was done by quest.....and also my cd 57 was in the low 30s so my dr is certain enough to start treating. But I have a lot of brain issues so I am thinking maybe quest bartonella was false negative? Or does Lyme cause significant Alzheimer's symptoms too?
I am firmly convinced that we can and probably do have multiple illnesses and bacteria, viruses, fungi making us so sick. I think several can hijack and disable the immune system including HIV, mycoplasma, HHV, Lyme bug, cytomegalovirus, etc etc etc. it just goes on and on. You may want to check out the forums on myalgic encephalomyelitis, that one rings true for me as does lyme. And once the immune system is turned down or off, we just keep collecting more. Diagnosis is difficult to start with but with multiple culprits it is bewildering. I think the key is repairing immune system but until you figure out how to do that (glutathione, naltrexone, olmesartan and certain herbals all are proposed) you might want to just pick one thing that you test positive for and if there is a treatment available, try it. You have to start somewhere. I know I feel like a zombie and it is hard to make decisions in this condition and I have trust issues with MDs but I find myself needing to let the dr treat me for this.
The immune system is often able to function well, but the Lyme bacteria have the ability to hide from detection. What the immune system can't see, it can't kill. The bacteria often hide in slimy shields they make inside the body, called biofilms, where the immune system can't reach. That's why Lyme docs often prescribed two meds at the same time: one to break open the biofilms, and the other to kill the bacteria hiding in the biofilms.
At the same time, Lyme can indeed suppress the immune function, but once the bacteria are killed, the immune system can come back online.
Thanks again for all of the thoughtful/helpful comments.
I don't often admit, to myself and others, but I'm scared. I try not to let my mind wander, but the thought of living in this condition forever is inconceivable.
So, for my own peace of mind, I thought I would share a bit more about my symptoms and see if anyone can commiserate. I will mention that I had genetic testing conducted thru 23andMe and unfortunately, the results were not pretty. I seem have hetero or homo mutations of all the biggies, including all of the MTHFR genes, which makes detoxing much more difficult; just not sure what I can or should be doing in tandem with the Lyme treatment. I am scheduled to see a number of doctors, to determine if other disease states / syndromes are at work. So, in the interim, my symptoms:
Horrible Exhaustion: It's at the cellular level. My brain and body are done. Limbs feel weak and uncoordinated -- and I used to be an exceptional athlete. I can't hold a linear thought to save my life and attempting to pay attention to most anything causes great anxiety. I have had 3 sleep studies, with unremarkable results. The only diagnosis they came up with was extremely mild sleep apnea, with an index of 7, unexplained limb movements and noticeably, no REM sleep. I have tried a CPAP machine, but that has done nothing.
Brain Fog: It feels like my head is being squeezed; with great pressure around my temples and the base of my skull. It never ceases, but does occasionally lessen in the evenings, somewhat. I feel completely drugged and am just going about the motions each day without conscious thought. If I had a dime for every time I misplaced something, I'd be a wealthy man.
My head and neck also feel particularly hot and warm to the touch. I am concerned about possible neurodegenerative conditions at work.
Muscle Stiffness/Tightness/Numbness: My shoulders, neck and bottom of skull feel very stiff and hot to the touch. It's almost as if my neck is too weak to hold-up my head any longer, which now feels like it is sinking into my shoulders. Very odd. I'd also my lower back is another weak spot, but they may be directly related to my GI issues.
Gastrointestinal: My gut is all f'ed up. I always had minor GI issues, but they were, to the best of my knowledge, minor. While my stomach was always sensitive to the teach, I often didn't notice anything and was able to eat most anything without issue. However, in 2009i, after neuropsych issues became more apparent, I sought out a few specialists, including a GI doc, who diagnosed me with a classic case of celiac disease. Unfortunately, and quite surprisingly, the gluten-free diet actually sent my body into a tail spin.
I try to eat a clean diet, lots of water, flush my system, etc, but the stomach trauma never changes. I am beginning to think it is a physiological;/functional issue. Our gut is key to total body health, so would love to be able to get on top of this one.
Note: After 6 weeks of oral antibiotics, I had to stop the other day. The stomach pain just got too great. Clearly, my tummy was shredded. I am supposed to see my LLMD on Monday and will likely get a PICC line.
Body: I have been experiencing increases bouts of muscle and joint pain. Also, disturbingly, my whole body feels numb, which the limbs and head feeling the most numb. This has grown chronic
Balance and Coordination: I have noticed over the past few years that my balance, motor skills, etc have deteriorated. The average person probably wouldn't notice, but I surely have. I have gone from playing competitive div 1 level tennis, to a game I no longer recognize.
Esophageal: For over 20-years, I have had a sensation in my throat, like food was stuck. This may be a motility issue. It was originally labeled an esophageal spasm, but has never waned and, as suspected, may be caused by some other process.
Psychiatric: I have had increasing anxiety and depressive episodes. I am 99% sure that these issues are physiologically rooted and not the opposite.
Anyhow, just looking for feedback and reassurance that lyme, babesia, mycoplasma and any other possible co-infections that I could have, could be the cause for many/all of the symptoms above. I know I have a long road ahead of me. The journey may be a bit easier, If I feel like the outcome will be well worth it. I just want to live. My current life bears little resemblance to what it once was.
You wrote: "Muscle Stiffness/Tightness/Numbness: My shoulders, neck and bottom of skull feel very stiff and hot to the touch. It's almost as if my neck is too weak to hold-up my head any longer, which now feels like it is sinking into my shoulders."
I have neck weakness, similar to yours. My leg muscles and fasciae are very tight. I have to go to physiotherapy in every week.
My neck symptoms could result from possible Lyme, hyperparathyroidism, chronic tonsillitis or cervical dystonia. I still have lots of other diagnoses, eg. ME and hypothyroidism. Lyme is not quite sure but is possible. I have borderline chlamydia pneumoniae, but other co-infections of Lyme have not been tested.
I have many of the same/similar symptoms. a degree of fatigue not even imaginable unless you experience it. Fatigue is constant, as in dragging through the day in agony, needing to sleep or at least lie down, not really functioning and certainly not enjoying life; then there are episodes of fatigue that are even orders of magnitude beyond that, i.e, feeling so weak and heavy in my limbs and body that it approaches feeling paralyzed. I know I can move, but the idea of moving is exhausting and overwhelming. If that makes sense. Then I find I am out of breath very easily now, but I think this is a heart issue. I have heart palpitations and chest pains. I have to rest frequently in the middle of tasks (take a shower, rest; brush my teeth, rest: hold a curling iron up for 10 minutes doing my hair is a real challenge).
The cognitive issues - memory and concentration and learning and decision making - are the second symptom that most troubles me. I was a very bright child with a lot of potential. Now I feel retarded and unable to learn.
I am concerned about reports that antibiotics are less effective at reaching the Lyme bug when it is hiding in your brain.....and when you have had it for 20 or 30 or 40 years.
Lots of neck issues which are getting worse. I have been sick for a long long time, and things have gotten significantly worse in the last year. Chronic pain, some degeneration and arthritis but nothing exceptional or unusual on the MRI. But the pain keeps getting worse. Everything is very very stiff and tight; I am being "Rolfed" and the poor therapist must feel that he is massaging concrete! That's how it feels to me. It also feels like my neck is swollen somehow, or maybe that it feels blocked? I also have thyroid disease which may impact that. Or maybe that is how swollen glands feel, I have never been able to know how to tell if swollen from normal.
Chronic all over flu type pain and tenderness (I have fibromyalgia diagnosis too). The tenderness at the moment is in my limbs, my shins and arms mainly but also in other places when they are touched that I did not even realize hurt. Shooting pains (more like nerve pain than muscle) in my right arm from thumb to funny bone to shoulder. I think this is some kind of inflamed ligament or tendon, but no dr has attempted a diagnosis. My calf muscle (also on one side only) seems to be shortening or tightening so it doesn't feel long enough and it hurts. If that makes sense. Joint pain.
Lots of Autonomic Nervous System issues (temperature regulation, blood pressure, dizziness, heart rate jumps 20 when I stand up) and hormonal issues in addition to thyroid. Yes to gastrointestinal issues. It won't matter if you do the antibiotics IV or oral; they will still kill all of the good gut bacteria and allow candida to rage rampant and ultimately could cause leaky gut syndrome. I am trying to find advice on how to manage gut health before I start these antibiotics. Take probiotics how far apart from the antibiotics? That kind of info. Anyone?
I now am getting tremors in my chin. This is scaring me because I read that Lyme can cause Bell's Palsy. There are other random symptoms, too. Teeth grinding. Gum bleeding. Eczema. The moons of my fingernails have disappeared. Hair falling out, dry skin, dry eyes, dry hair. A huge cyst on my scalp that has been there a long time. A strange painful spot on the bottom of my foot that has formed a callous and periodically is very painful. One episode of gout! (I don't fit the profile). I've had balance issues for a while. It just goes on and on and on. There is a lot of overlap in symptoms between ME, fibromyalgia, CFS, Lyme, Parkinson's, Alzheimer's, MS, diabetes, etc. There is a lot of overlap. And they don't know what causes any of them except Lyme (bacteria). But they are starting to suspect pathogens like bacteria and viruses for ALL of them.
(and to zazoo33 as well:)
It is clear you are dealing with a lot --
Rather than continue with a long series of visits to various kinds of docs, I'd suggest (strictly as an amateur former Lymie here) collecting all your test results and taking them to an experienced Lyme specialist for a review of the whole situation. I don't see where you are located, but if you let us know generally ('near Chicago') perhaps we could help you locate a Lyme doc to consult nearby.
A good Lyme doc looks at the whole picture of a patient, not just a few test results, because Lyme is systemic and affects to many body systems along with the mass confusion that co-infections introduce. A 'big thinker' is what I have in mind, for example: my Lyme doc was (is) an immunologist by training, and that gives the doc a certain broad view of what all is going on.
Rather than do more rounds of more docs, consider finding a doc who already has a broad view of medicine ... a GP can sometimes do this, if working at a high level and not just flu shots and sniffles. Given my excellent experience with an immunologist, my thoughts tend to go in that direction.
This would save you consulting with every type of doc for every symptom array you have, because eventually you would need to get to a Lyme doc with a broad view to rule out Lyme, if you've not figured out what's going on. In other words, I'd cut to the chase.
You say, you are "just not sure what I can or should be doing in tandem with the Lyme treatment. I am scheduled to see a number of doctors, to determine if other disease states / syndromes are at work."
Why not work backwards and start with a Lyme doc? If it's Lyme, then you'll know. If it's not Lyme, then a doc with a broad vision can tell you where you might focus your medical visits, on what kind of doc.
I say this partly because I didn't know what I had when I was so sick ... I went through 20 docs of all different kinds, similar to what you are doing, and none of them had any idea at all, but only one of them was bold enough to say just that: "I know you are sick, but I just don't know what it is."
Finally a doc ran a Lyme test that came back positive, and the doc gently told me: "Oh, you can't possibly have Lyme. I have patients with Lyme, and they ... are all ... near death."
Nice work, doc. Well, I have a lifelong friend who lives far away, but I knew she had been ill for quite some time and had been diagnosed with Lyme. From that, I knew that Lyme was serious, because my friend is a trained scientist and would know if that was a reasonable diagnosis, based on her own research.
So I took all my test results (from the very beginning of my illness, regardless of what the doc tested me fore or said to me) and went straight to a Lyme doc, who diagnosed me with Lyme and babesiois (like malaria), treated me, and I have now been well for several years.
I tell you all this because I have been down the long and winding road that you seem to be on, and rather than nibble away at the situation with various clueless docs, I would go straight to a knowledgeable Lyme doc for an evaluation.
A doc who does not 'believe' in Lyme as anything serious or widespread (I had one doc on my journey tell me that I could not possibly have Lyme because 'we don't have it here') will not think of Lyme or take it seriously OR test for it by a lab whose tests are most accurate. (The usual lab tests are lousy, but keep copies of them anyway for your future doc to see.)
So if you were my best friend or my family member, I would take you a Lyme specialist without delay. Please consider doing so! If you need help finding a good Lyme doc, let us know. Best wishes to you -- keep us posted.
Let the doc do the work; you have enough to deal with already! Best wishes -- let us know how you do.
Thanks again Jackie and everyone else who has responded! I am trying to follow the Lyme protocol best I can, but likely need to make some changes. I had to go to the hospital yesterday for what felt like a total body infection - almost sepsis-like. I was in such great pain and marvel at how inadequate our medical system is - felt like death, struggling to stay conscious and the thoughtless emergency doc said there is nothing we can do for you here.
Unfortunately, my genetics are proving to be very cumbersome. I have pretty much ALL of the biggie mutations, including heterogeneous for all of the MTHFR genes.
So, I am going to need to figure out how to effectively detox, while trying to heal my body. I am going to make an appointment this week with a gene specialist to devise a supplement plan. I am also going to likely get the PICC line on Monday. Orals are killing my stomach. I may need to start taking heavy duty pain medication.
Any other recovery recommendations? In addition to Lyme and all of my co-infections, including pneumonia, I was very recently tested for epstein barr, which had extremely high titters and appears to be reactivated.
I just so desperately want to sleep for the next 6-months. Need to convince my wife that drastic changes need to occur if there's any hope for recovery.
Happy 4th to everyone.
Perhaps you are having a 'Herxheimer reaction' -- it's when so many of the bacteria are killed off by treatment all at once that there is a large amount of garbage and chemicals introduced into your system, and it can produce the kind of symptoms you are having. I'm not medically trained, so this is just a guess, but it does happen.
Talk with the doc about your reaction and figure out with him/her what is the best course of action. Sometimes the decision is to treat one infection first, then when it is gone, move on to treating the next one in serial fashion. It's a very individual analysis and plan, because the assortment of infections mixed with your own immune system and tolerance is key to managing it.
'Herxing' is quite common, tho some have it worse than others. Your doc is wise to acknowledge the issue and deal with it. The doc will look at everything you have been diagnosed with and your reactions to the meds you have been taking recently, then develop a step-wise approach to what gets treated first, with what meds and supplements, at what doses -- and what constitutes a reasonable level of die-off side effects versus unreasonable.
It may take some different approaches and combinations, but hang in there! I kept a chart on my computer for each day, listing what I took (meds and supplements) in what doses, at what times, with what food or none, and then a box for how I felt afterward as the meds for that dose kicked in, along with general comments.
Some docs like to be told verbally what your effects are, but I think Lyme docs are probably experienced enough to know that memory is often faulty in Lyme patients and won't mind browsing through your printed-out chart. Sounds like a hassle, but really doesn't take long once it's set up.
My doc loved my chart ... I'd hand it to the receptionist when I checked in, then doc would review the chart before even meeting with me, so that we were on the same page, and then he'd keep the chart in my file for future reference if needed.
Some docs are less user-friendly that way and will say "Just give me a summary", but a Lyme doc usually understands that memory can be quite impaired in a Lyme patient. The memory function comes back when treatment is complete, so don't worry about that. It's just a matter of finding a useful way to communicate with your doc currently.
All the effects you are going through now are things that should go in your chart -- the doc will know what's causing them, and can make any needed adjustments to diet and meds. Hang in there -- we've all been through some version of what you are having.
Ask the doc for a 'big picture' view of how s/he proposes to attack your various ailments, so that you have an idea of what's up. It's quite comforting to know where the road may lead. Some docs also like or at least permit a friend or family member to sit in on the consultation to take notes, since 'Lyme brain' can be a real hindrance to memory. Been there!
Keep us posted -- !
Sorry if I overloaded you with information before. I know that feeling. I've had so many of the same symptoms you describe. I'll share some of the things that worked for me, just know that not everything works for everybody, and I'm not a doctor. These are just things that worked for me.
I was so bad before I was diagnosed that I would read something and by the time I got to the end of the sentence, I didn't remember what it was about. Taking notes and re-reading things helps.
Now that I have a PICC line, I'd recommend you to make sure you have no responsibilities your first week of IV abx. I found the die-off would hit me the next day, and got worse for the next few days (or more).
Your PICC line will be uncomfortable until it heals and you won't be able to do much with that arm until then. A hot pack and a mild pain reliever really helped me.
Triage. Pick a couple things that are tormenting you the most and address those. You can't do everything at once. For you, I would guess that's detoxing and the gut. And maybe something for the depression. Lifting the gloom increased my tolerance for the symptoms.
There are plenty of supplements to take for detoxing. (A clean brand of Chlorella has been good for me.) Ask your doc. If she/he doesn't do supplements, have someone help you do research online.
IV glutathione is the best detoxer I've had, by far. Since you're getting a PICC line, it'll be easy for you to take it. Definitely ask your doc about it. I wish I'd had it earlier in my IV treatment. My insurance actually pays for some of it.
When I couldn't tolerate the die off anymore, my doc eased off on my dosing and pulsed the meds. That has definitely made it more tolerable.
I understand the miserable gut, too. You absolutely must take 2-3 high quality probiotics every day, 2 hours away from antibiotics. (Florastor is a unique benign yeast-based probiotic that is resistant to antibiotics. I've found it helpful.)
I took UltraInflammix and IgG2000DF. The second one seemed to help me more. I took it for many months.
A high quality digestive enzyme helped more than I expected it to. I recommend that, too. It can help with digestion and absorption.
You could very well have malabsorption and a variety of nutritional deficienies as a result. Have you had various vitamin and mineral levels tested? Some deficiencies that can impede recovery are B12, B6, and zinc.
Remember, when your detoxing pathways are overloaded, junk that you take in just stays in. Go for nutrient dense fresh food as much as possible, avoiding sugar and caffeine. Organic produce is best.
I know another Lyme patient who got noticeably worse when she temporarily went gluten-free. I still wonder why that happens. Human bodies are clearly not all the same. When I went gluten free I felt better in less than a week. Go figure.
My GI analysis showed I had sky high levels of h.pylori and campylobacter, so I stopped Lyme meds to do a PrevPac. That helped. Then, a round of an antibiotic good for e.coli and some parasites also helped. Have you been tested for these bacteria and parasites yet? There's a chance you have one or more, given your messed up gut.
I developed SBO, small bowel overgrowth at one point in treatment. It's where a big plume of excess bacteria develops in the small intestine and then spreads up into the stomach, causing bloating and pain. Probiotics, kefir, and non-inflammatory foods helped me resolve it, along with a break from abx.
You could very well have yeast problem in your gut. I know I do when my abdomen swells up because my intestines are so bloated. I get a white film on my tongue, too, depending on which med I'm on. Yeast can interfere with absorption in the gut and antibiotics, so you want to get that under control. There are meds and supplements to take (Yeast Cleanse is the one that I take to keep it under control).
I know people who swear by coffee enemas. They stimulate the liver which speeds up filtering of toxins. One person said you have to take a bunch of chlorella as part of the process in order to absorb the toxins the liver dumps into the intestines. Otherwise, it could get reabsorbed and recirculated. I haven't been brave enough to try it yet. I'll let you all know if I do. Given how crummy I've felt the last couple days, maybe it's time.
Managing the gut is really important, as some estimates are that 80% of our immune system cells live in the gut. You desperately need a good, working immune system right now, so you'll want to give them a good home.
Hang in there! I hope you start feeling better soon on the IV meds. Just know it's going to be a long haul.
I know this is an extremely delayed response. In fact, I'd totally forgotten about this exchange and came upon it during a recent google query. Unfortunately, I wasn't able to follow through with IV therapy at the time. I've since gotten a case manager at my insurance company and may reapply. In the interim, I have decided to follow the Cowden Protocol and plan to begin this Monday. I'm curious whether anyone else on this forum has followed the protocol and had success, particularly given the severity of my symptoms and possibility of this being long term, late stage lyme.
You might want to start a new thread here, so people don't have to read allllll the way through the earlier messages, since your current question is quite focussed.