The Lyme Disease Thread

[CarlaB]

I hope your PCP will work with your LLMD, that would be great.

I'm glad that you are having some good days. I usually feel better immediately, then about day 4 start herxing, so if you're not herxing yet, that's good. You truly may already be feeling better, I usually do when I start new meds.

[mftnchn]

Is there any seasonal connection to lyme flares? Judst dawned on me: the severe flare that put me back on abx last year occurred the exact same time of year as this current flare?

Any ideas?

Sherry

[CarlaB]

Sorry, Sherry, I don't know.

[susieg-1]

  CarlaB said:

I hope your PCP will work with your LLMD, that would be great.

I'm glad that you are having some good days. I usually feel better immediately, then about day 4 start herxing, so if you're not herxing yet, that's good. You truly may already be feeling better, I usually do when I start new meds.

Five full days on doxy and I feel pretty good, not as tired, decreased muscle/joint pain, no herx. I am feeling confident that I will continue to improve.

An interesting aside: I met with a business counselor for the first time today to assist me in starting gluten-free baked goods business. I felt compelled to mention Lyme disease to this very nice woman and she begins asking ? about disease and comes to the conclusion that she may also be suffering from Lyme!!! I told her about IGenex testing and she planned to call her Dr. after our meeting to begin the testing process!! She said "Maybe there was a reason that we were supposed to meet today" I felt soooo good about helping her as her symptoms screamed Lyme disease

[mftnchn]

Okay this is from the Marshall protocol website. Of course this is controversial and I had decided not to pursue it, BUT...now I wonder.

  Quote

A rapid rise in 1,25-D (from exposure to sun/lights or ingested Vitamin D or the Herxheimer reaction) causes symptoms because the body tries hard to maintain homeostasis. This can happen even with a low 1,25-D level.

I'm going to do some more reading.

Sherry

[susieg-1]

  mftnchn said:

Okay this is from the Marshall protocol website. Of course this is controversial and I had decided not to pursue it, BUT...now I wonder.

I'm going to do some more reading.

Sherry

Sorry, I am not savvy enough to know what this means. what is 1,25-D?

[mftnchn]

1,25 D is a level of Vitamin D. Its the active form in the body that is sort of like a hormone in its action.

After a couple days of reading, I've decided this is not an approach I trust even though there may be some people improving on it, including some lyme patients. If anyone wants to know why, you can PM me.

My levels of D are way too low, and this may be why I have had the shift in symptoms at this time of year.

Sherry

[luckeeluke]

I was reading through this thread over the last few days, it has been helpful to read all the replies. Great information!

I have not been feeling well for about 3 years. Typical run of symptoms- excruciating headaches all day every day in the begining, "sinus infections", light sensitivity,jaw aches, neck aches/knots/electrical feelings/tightness, shoulder tightness, gluten/casein intolerant, hit by a truck feeling, teeth buzzing, small muscle twitches, internal buzzing, metallic taste early on, fatigue, brain fog, chemical sensitive- molds, perfumes, inks, dryer sheets, air fresheners, some cleaners, plus many other symptoms. A lot of them come and go now, I've had a progression of sorts over the last 3 years, different symptoms. Sometime sI see patterns within patterns with my symptoms and other times none of it makes any sense.

Had two deer tick bites that I know of, no rash, 3 negative ELISAs, etc. I was diagnosed clinically in February with Lyme by an LLMD in Mass. I know that IgeneX is one of the better labs, I don't have the $ right now to test through them. I did get my first western blot through Quest which only band 41 came up positive for IGG.

I wanted to ask how many other folks have had a "strange neck electric feeling." I guess it is similar to what some people would call a L'Hermettes sign (don't know if that's exactly what it is called). I also get stiffness, aches, popping, muscle tightness in neck, jaw, and shoulders. But the buzzing/electric like symptom really stands out as being more odd than some of the other stuff.

For me it seems to travel from the top of my neck/base of my head down to the middle of my back and disappears. Sometimes I get a mini one on my thighs and heels as well. It's not really that painful, just very strange feeling. A lot of the times it will happen when I bend my neck forward or tilt it to the side. A lot of times when I'm sitting down also.

I had this neck sensation for about the first three weeks of the Tetracycline (3 months)- when I was feeling my worst. Then it seemed to go away. I have just finished my Tetra and I can feel it coming back ever so slighly (probably only to get worse) after only 3 days of no antibiotics. I have had it at other times when I've had other short courses of antibiotics for other things over the past 3 years. However the other times it lasted for a month or two each time. This time it was only three weeks. I really wonder if it's the bacteria in the nervious system, getting killed off and then hiding/re-emerging and messing stuff up. I dunno.

I also have has similar muscle twitching/buzzing/electric zigs and zags in my things, legs, and feet/heels. The have increased substantially while on the Tetra antibiotics. None of it hurts that bad, just wacky.

I'd definitely like to hear about any similar neck/spine/electric buzzing/etc. experiences from people that have Lyme or are clinically diagnosed. Any experiences or information is helpful. I'll probably check back in a few days. Sorry for the long post.

[CarlaB]

Long posts are welcome here!

I have not had that buzzing you are describing but I have heard other people talk about it at Lymenet.

I'm glad you're under the care of an LLMD. Have you discontinued meds? It sounded like it from your post. You really should be treated until you are symptom-free.

Welcome .... I'm glad you joined us.

[dlp252]

  luckeeluke said:

I also have has similar muscle twitching/buzzing/electric zigs and zags in my things, legs, and feet/heels. The have increased substantially while on the Tetra antibiotics. None of it hurts that bad, just wacky.

I'd definitely like to hear about any similar neck/spine/electric buzzing/etc. experiences from people that have Lyme or are clinically diagnosed. Any experiences or information is helpful. I'll probably check back in a few days. Sorry for the long post.

Hello and welcome. I definitely have neck/spine issues. I also have lots of almost involuntary muscle twitches, but I can't say I have that electric feeling. My skin often burns like it has a bad sunburn, and I get sudden sharp stabbing pin prick type feelings, but not the buzzing thing, at least I don't think so, lol.

[mftnchn]

Welcome, I'm glad you've joined us.

I for sure have that electric feeling, but not in the same location. Typical for me is in the upper back parallel to the spine on both sides and then up through the shoulder and down the arms into my fingers. I guess sometimes I have had it in my lower body too but not often. When it gets severe it burns but now after a lot of treatment that is rare. Mild it is mostly annoying.

My symptoms progressed as well and I have had a lot of weird ones especially in the early years of untreated lyme. Eventually it settled into pain like above, or arthritis like joint pain and generalized muscle pain.

I'm celiac (clinical diagnosis), and have had the chemical sensitivities too.

[truthsearcher]

I sure have had those electrical feelings. I've had them sence childhood. It would be a huge jolt of pain in my neck then go away. This grew into constant pain in my cervicals as I got older.

The pain is constant around the C5 area and shoots up into my occipital (back of head). I get tingly. prickly feelings all over and get the buzzing, electrical feeling more at night when in bed. I always thought before Lyme that it was Restless leg syndrome but Lyme is definitly invoulved.

Some times I feel my body can't shut down, other times I feel like bugs are crawling inside my bones.

I have all the jaw, cracky bones stuff too, but much better after 4 months Lyme treatment

[luckeeluke]

  CarlaB said:

Long posts are welcome here!

I'm glad you're under the care of an LLMD. Have you discontinued meds? It sounded like it from your post. You really should be treated until you are symptom-free.

sorry been a few days since I have checked the computer. Thank you for the replies. I was on Tetracycline 1500mg/day for 3 months. now I'm about to start Biaxin1000mg/Plaquenil200mg per day for 3 months.

[luckeeluke]

  mftnchn said:

Welcome, I'm glad you've joined us.

I'm celiac (clinical diagnosis), and have had the chemical sensitivities too.

The two big things that I go back and forth between right now are Lyme and also mold. I seem to be gluten intolernant/casein intolerant, but not celiac. It seems like Lyme can mimmick so many things. I've heard it's really advanced and wicked smart bacteria; I'm sure it uses environmental influences on our bodies to its own advantage. Mold, chemicals, perfumes, allergens.

Definitley have the chemical sensitivities as well.

It's so hard to figure this stuff out even with a good doc or LLMD.

Seems like the electric neck feeling for me comes around mostly during/after antibiotics, just like a lot of the buzzing and twitching for me. If I move my neck diferent ways it makes it better or worse too. The neck electric thing seems to happend during the first few weeks or antibiotics or during a real short course of antibiotics and seems to extend after that for a while.

truthsearcher-

I also get the restless legs also. Sometimes here and there and then sometimes multiple times a week or like once or twice a day. Good quality dark chocolate (even a tinly bit) seemed to make it way worse, something I noticed lately over the last few weeks. I have not idea what the correlation might be.

I appreciate the responses from before- thank you

[susieg-1]

  luckeeluke said:

The two big things that I go back and forth between right now are Lyme and also mold. I seem to be gluten intolernant/casein intolerant, but not celiac. It seems like Lyme can mimmick so many things. I've heard it's really advanced and wicked smart bacteria; I'm sure it uses environmental influences on our bodies to its own advantage. Mold, chemicals, perfumes, allergens.

Definitley have the chemical sensitivities as well.

It's so hard to figure this stuff out even with a good doc or LLMD.

Seems like the electric neck feeling for me comes around mostly during/after antibiotics, just like a lot of the buzzing and twitching for me. If I move my neck diferent ways it makes it better or worse too. The neck electric thing seems to happend during the first few weeks or antibiotics or during a real short course of antibiotics and seems to extend after that for a while.

truthsearcher-

I also get the restless legs also. Sometimes here and there and then sometimes multiple times a week or like once or twice a day. Good quality dark chocolate (even a tinly bit) seemed to make it way worse, something I noticed lately over the last few weeks. I have not idea what the correlation might be.

I appreciate the responses from before- thank you

I also get rls symptoms, although doxy treatment is making a BIG difference in symptoms!! I find that any sugar at all especially high fructose makes this restless leg feeling and muscle/joint pain much worse. So I am still avoiding sugar and am feeling darn good lately. hth

[CarlaB]

  luckeeluke said:

sorry been a few days since I have checked the computer. Thank you for the replies. I was on Tetracycline 1500mg/day for 3 months. now I'm about to start Biaxin1000mg/Plaquenil200mg per day for 3 months.

Good. I was on Biaxin, it has a bad taste that lingers, but it's a good drug. I've been on Plaquenil for almost a year and a half.

  susieg_1 said:

I also get rls symptoms, although doxy treatment is making a BIG difference in symptoms!! I find that any sugar at all especially high fructose makes this restless leg feeling and muscle/joint pain much worse. So I am still avoiding sugar and am feeling darn good lately. hth

My RLS goes away when I supplement iron. My hemoglobin is borderline low without supplementation ... it's about 13.5 with supplementation and that's enough to get rid of the RLS.

[mftnchn]

Luke, I notice sometimes I might have symptoms after chocolate but it isn't consistent. Chocolate also tested fine for me on ART, so I haven't figured out the connection yet.

[luckeeluke]

  mftnchn said:

Luke, I notice sometimes I might have symptoms after chocolate but it isn't consistent. Chocolate also tested fine for me on ART, so I haven't figured out the connection yet.

yeah mine is not always consistent but seems to happen somewhat commonly with dark chocolate. The good stuff with 70% cacoa and less sugar, etc. Maybe the iron, magnesium, or antioxidants. I think dark chocolate has those types of things in it. I guess Lyme loves magnesium, but can also create a magnesium deficiency in the body, maybe that has something to do with it- I dunno.

I have heard about the ART testing. Can you tell me a little more about it, where you had it done, and roughly how much it costs? Thanks.

[luckeeluke]

  CarlaB said:

Good. I was on Biaxin, it has a bad taste that lingers, but it's a good drug. I've been on Plaquenil for almost a year and a half.

I have heard that Plaquenil can cause some side effects especially with eyes. I think I'm going to be taking 400mg a day. Seems like it should be ok at that dose. I have heard of the Biaxin mouth taste too. I wonder if there is anything else in terms of side effects that can happen with Biaxin.

All I know is this combo seems like it will be easier on my stomach than the Tetra. We shall see. Taking a little break in between and loading up on extra probiotics.

[CarlaB]

I haven't had eye issues with the Plaquenil at the dose you mentioned. They say to have your eyes checked with it. It's an all around great drug.

I don't know about the Biaxin ... I was on so many other things that I can't credit one med or another with the improvement.

[luckeeluke]

I thought it was interesting . . . there seems to be a correlation between having a colonoscopy/endoscopy/biopsies and people that have Lyme. I have heard others that said they had the procedures done because they thought they had Celiac, but it turns out they really had Lyme, or even both.

I was in the waiting room of my LLMD last week and 2 other people that were waiting with me also thought they had celiac/gut issues and went through the colonscopy/endoscopy etc. I have also had those procedures and the blood testing but nothing turned up even while on gluten.

Seems like there is some kind of relationship between gluten and Lyme, also other foods as well.

All I know is I felt better when I cut out gluten and casein/milk. Didn't really solve anything, I just can tell that it helped/helps now. I think the gluten and the milk proteins are hard to digest and that can cause issues. I also think somehow the Lyme has an affinity for gluten and somehow can use it to its advantage.

All I know for like a year or two in the begining I had soft stools and a fat slick in the water, but I thought that was normal. . . yeah right.

. . . just some random thoughts

[mftnchn]

  luckeeluke said:

I thought it was interesting . . . there seems to be a correlation between having a colonoscopy/endoscopy/biopsies and people that have Lyme. I have heard others that said they had the procedures done because they thought they had Celiac, but it turns out they really had Lyme, or even both.

. . . just some random thoughts

We've discussed this on the OMG thread and maybe some others too. My impression is that any situation that can cause leaky gut can lead to gluten intolerance. Gluten is one of the harder things to digest, and when leaky gut occurs it gets into the bloodstream and we develop antibodies to it.

Lyme can attack any part of the body including the GI system, and perhaps some of the co-infections are more prone to the gut area anyway like bartonella (BLO). Also my LLMD told me lyme will attack anywhere there is a weakness, so iif you did have some compromised GI areas--for whatever reason, that might explain why lyme goes there.

We are all different. I think that I am actually celiac as well as a lymie but I suppose there is still a chance it is all lyme related. Even so, since I am a double DQ2, lyme is certainly enough stress to trigger celiac when I have like 32X the normal population's risk for developing celiac. So I am going to assume I have it.

Carla's gluten intolerance has gone away, she's one of the lucky ones.

Sherry

[dollamasgetceliac?]

Hi;

I think I posted earlier , but I lost track, I counted over 30 symptoms of the lyme disease, I was wondering if these are from a medical journal or a gathering of what people have put together. I do have a tick bite, and I was exposed to ticks a lot in the past. My symptoms got really bad about 7 months ago. Strange that the Neurologist asked me about the few symptoms I am having and said" well you are a healthy person Neurologically" Celiac does have a lot of stuff. I was worried about my stuffy ear, half numb face and tennis elbow( hard time lifting my arm) I have been an insomniac for the last 7 years and the list goes on. I repleid before to another post How do I get the blood test done , now I really think the Dr. should do it. I just think that I need to convince him , I have paid a fortune to the Doctors and i think they should do the test. The evidence is overwhelming.

If he deneis me this right I will have it done elswhere? what is the name of that test again ?

THNX

[CarlaB]

Welcome to the thread!

The information you are looking for is on the first two pages of the thread - post numbers 3, 14 and 20.

[Ursa Major]

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.

When following one link, I found somebody say this:

  Quote

It took almost 5