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Author Topic: New Here and would love some help and advice
aligatorali
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Hello

I had a positive band 23 after 7 months of severe brain fog, (I felt like my head was in a fishbowl, LITERALLY!)I felt far away, distracted, like I was on some kind of drug. This happens less intensely now and is less frequent. Also, fatigue, debilitaing facial pain, neuro symptoms, itching in ears and scalp, chronic sore throats, insomnia, severe panic attacks and depersonalization episodes, etc.

I finally got a doc willing to treat for lyme using ceftin long term. I am taking Bactrim with it, because I have 3 weeks worth from an R I never filled in the past, so I jsut filled it and am taking it with the Ceftin 2x a day. I have been on the Ceftin for 3 months and i am beginning to have terrible itching, as well as small, darkened areas on my skin, crawling sensations, and feeling like every so often something is biting me. Theres never anything there. Whats worse, since December, I have two long, dark floaters in my eyes, as well as several dark spots. My eyes itch, and will often hurt, and I feel like there are things crawling behind my eyes and all over my head. My skin tingles faintly, my brain feels strange, I have odd sensations in my head. I have terrible insomnia, the palms of my hands get splotchy and red, I have rib pain and a feeling like my ribs itch deeply on the inside... Chest Pain, breast pain, occassional genital pain, trouble holding my uring, I even feel short of breath at times, but not all the time.

I am trying everything. Colloidial silver, cumanda, good vitamins (A, C, E, multi's, probiotics, fish oil, etc)

Each time I call my doc, he says I am herxing. Really? Herxing every single day for three months? He says a herx is an allergic reaction and has me taking allegra, an antihistamine, for the herx. I dont know if its working, but I dont know if this is a herx, or if my lyme symptoms are worsening. I need help. Please!

my co infections came back neg, but they were done at lab corps. Unreliable.

I'd like someone to look at my symptoms and tell me they all sound like lyme.

And based on these symptoms I have listed, perhaps tell me what other co-infections I may or may not have. And...the herx part. Yes, some days are worse, (premenstrual the symptoms become intolerable!!) But herxing all the time? I am an otherwise healthy 34 year old female and was active until 7 months ago when it all hit me.

Will someone experienced please take me under their wing, and send me a message? And for Gods sake DONT TELL ME I HAVE MORGELLONS! I am petrified!!! I have a band 23 result, I have lyme disease.

AliGatorAli

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Lymetoo
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Sure could be Lyme!! Are you watching your diet as far as sugar and white foods?? Avoiding them, I hope. Glad you are on probiotics .. hope they are GOOD ones.

I herxed for a whole year, so 3 months is quite possible. I didn't feel much better for about 18 mo, then at 2 yrs I began turning the corner.

I'm moving this to Medical Questions where you will get more help!! [Smile]

I hope you have the best LLMD in FL.

--------------------
--Lymetutu--
Opinions, not medical advice!

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onlyflippin
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I get alot of the same symptoms when i take alleve. could you be allergic to something in alleve?

--------------------
Help I am being forced against my will to learn medicine!!!

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aligatorali
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Alleve contains Naproxen Sodium. No, I dont use that. I seldom use pain medicine anymore. THough most days I need it. Are you getting better? Do you have any helpful advice? Are you saying that the intense itching might be part of some lyme induced allergic reaction? I am praying someone reads my intro post and can answer these questions.
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beths
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Hate to say it, but it kinda sounds like bart symptoms=eye issues and bladder issues?
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LymeAware
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I'm sorry you are having such a difficult time. All of what you describe could certainly be lyme and/or co-infections.

My mind is very foggy right now, but one thing I wanted to bring up here:

Can someone comment on a herx being an allergic reaction? I may not be thinking straight, but I don't usually think of it as such. A herx means your body is dealing with the toxins from the lyme treatment, and you need support with detox.

There are many who do herx for long periods of time though, so you certainly could be herxing. You need to be backing up your treatment with detox however, to help your body handle all this.

From reading all you are trying, I wonder if you could be killing the bacteria faster than you can process the toxins.

Are you working with a doctor familiar with lyme?

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elkielover80
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I've never heard of a herx described as an allergic reaction before. The way is was explained to me is that the herx is your body's reaction to the die-off...

Someone smarter than me may correct me but when you take meds/supplements that kill the bacteria/virus in mass quantities, as they die they release toxins. Obviously these toxins are poison in your body. Your organs/lymph system has to filter all this junk out, along with the skeletal remains of the bugs that are dying, and all the other environmental toxins that we get everyday.

The filtering systems in our bodys can't keep up with the massive load of toxins and gets backed up. That backup causes the "herx". Your body is essentially loaded with poison/toxins that can't get out.

The chest pain, panic attacks, breathlessness could possibly be mycoplasm pneumonia. Just a guess... I had it and I felt like I was suffocating all the time. The rib/chest pain was horrible!

A lot of your symptoms sound like they could be lyme related with a cocktail of other virus/bacterial infections thrown in.

Would lessening the dose of abx help to slow down the die-off a bit then gradually increase? Or have you tried to help your body detox? Drinking water, water, and then more water is necessary when detoxing. [Smile] I take a lot of supplements to help my liver/kidneys/lymph system stay clean and strong thru detox. Detox baths also help (epsom salt, baking soda and peroxide). Sweating helps detox thru the skin...

I feel for you! I hope you find some relief. You're not crazy! There were so many nights I was certain I would not wake up in the morning. Paranoia got the best of me a few times. If it's any encouragement to you, I found the right dr who knows how to treat the different infections and I can see the light at the end of the tunnel. Maybe a good LLMD is in order for you?

Good luck!

--------------------
No tick bite/rash
sick Nov '09
diagnosed Mar '11
Doxy/Zithro
LOTS of supplements

Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED!

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aligatorali
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Wow...so many responses. I cant believe this. Its amazing!! I have suffered alone for months and REFUSED to go on a board like this because hearing other peoples symptoms scared me, and hearing about life long sufferers who never get better just paralyzed me with utter fear and panic. Yes, I see a lyme literate-"ish" infectious disease doc. But I live in South Florida, and lyme literate doctors are as scarce as snowflakes down here. I drive three hours to Lakeland to see a doc (whose name I will not mention, because he actually TREATS LYME in a state where doctors downright REFUSE to) and who swears he can get me better and that his success rate with Lyme is ecellent, using ORALS no less! As for detoxing, yes, I am just always afraid that if I use a colon cleanse, etc, I will strip the antibiotics from my system and interfere with treatment. Is this possible?

Also.... I've only been treating since March 14. Thats not long enough really to see improvement and its too soon to say the abx arent working, correct?

Thank you all!!! : )

I have done about 6 months of intensive research on Lyme, and will get to the point where I will start sharing my knowledge here, but for now, I am making the most of having caring, like minded individuals to talk to who understand the hell that this disease is.

How about some hope! : )

Alicia

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Robin123
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quote:
Originally posted by aligatorali:
Hello

I had a positive band 23 after 7 months of severe brain fog, (I felt like my head was in a fishbowl, LITERALLY!)I felt far away, distracted, like I was on some kind of drug. This happens less intensely now and is less frequent.

Also, fatigue, debilitaing facial pain, neuro symptoms, itching in ears and scalp, chronic sore throats, insomnia, severe panic attacks and depersonalization episodes, etc.

I finally got a doc willing to treat for lyme using ceftin long term. I am taking Bactrim with it, because I have 3 weeks worth from an R I never filled in the past, so I jsut filled it and am taking it with the Ceftin 2x a day.

I have been on the Ceftin for 3 months and i am beginning to have terrible itching, as well as small, darkened areas on my skin, crawling sensations, and feeling like every so often something is biting me. Theres never anything there.

Whats worse, since December, I have two long, dark floaters in my eyes, as well as several dark spots. My eyes itch, and will often hurt, and I feel like there are things crawling behind my eyes and all over my head.

My skin tingles faintly, my brain feels strange, I have odd sensations in my head. I have terrible insomnia, the palms of my hands get splotchy and red, I have rib pain and a feeling like my ribs itch deeply on the inside...

Chest Pain, breast pain, occassional genital pain, trouble holding my uring, I even feel short of breath at times, but not all the time.

I am trying everything. Colloidial silver, cumanda, good vitamins (A, C, E, multi's, probiotics, fish oil, etc)

Each time I call my doc, he says I am herxing. Really? Herxing every single day for three months? He says a herx is an allergic reaction and has me taking allegra, an antihistamine, for the herx.

I dont know if its working, but I dont know if this is a herx, or if my lyme symptoms are worsening. I need help. Please!

my co infections came back neg, but they were done at lab corps. Unreliable.

I'd like someone to look at my symptoms and tell me they all sound like lyme.

And based on these symptoms I have listed, perhaps tell me what other co-infections I may or may not have.

And...the herx part. Yes, some days are worse, (premenstrual the symptoms become intolerable!!) But herxing all the time? I am an otherwise healthy 34 year old female and was active until 7 months ago when it all hit me.

Will someone experienced please take me under their wing, and send me a message? And for Gods sake DONT TELL ME I HAVE MORGELLONS! I am petrified!!! I have a band 23 result, I have lyme disease.

AliGatorAli

Breaking this up for easier reading for many here.

Sounds like Lyme symptoms to me. Herxing can take awhile. It means die-off, as in the organisms being hit effectively by the meds.

I drink mangosteen juice to stop all eye symptoms. It's an anti-inflammatory antioxidant juice. I drink the Ultra and Mango-Xan ones, and there are lots of versions in healthfood stores and online.

We're all different when it comes to what works, and we can only find out by trying. If you try the mangosteen juice, go slowly and drink a lot of water.

Each of us has to find what helps us sleep. For some, it's melatonin. For me, it's 25 or 50mg benadryl before bedtime.

Treatment is multi, so keep learning what you can do about handling all the various symptoms.

You can also use the search function at the top of the page - you can type in any word or phrase and that will bring up all the archived threads.

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aligatorali
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Hey!! I looked at an old lab from 5 months ago. I showed antibodies to mycoplasma pneumoniae, but I think the disclaimer on the lab said that lab results do not differentiate between a past and current infection. Co-infection mystery number one, solved. Does anyone know what a good treatment for it is? My doc had me on 10 days of azithromycin, then ten days of cipro, and still these respiratory and rib symptoms persist relentlessly. But he did not know about the mycoplasma either!
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Lymetoo
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You haven't replied to my question about your diet .. are you making sure to prevent yeast by following a good diet, free of sugar and white foods? VERY important. Yeast/candida causes intense itching.

--------------------
--Lymetutu--
Opinions, not medical advice!

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aligatorali
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Well, I have cut down on refined sugars, but I still eat pasta and other gluten containing foods. I am on a mostly organic diet now- lots of fresh leafy greens and fruits. An amino acid replacement drink, and Ive cut down on dairy as well. But no, I have not been dilligent to that effect. I was concerned about candida. I just had my doctor call in a week of diflucan. I know I have to change my diet too. Can diflucan (flluconazole) cause a herx? Is it effective in at least helpful in killing off SOME of the candida if the diet is improved?
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aligatorali
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Well, I have cut down on refined sugars, but I still eat pasta and other gluten containing foods. I am on a mostly organic diet now- lots of fresh leafy greens and fruits. An amino acid replacement drink, and Ive cut down on dairy as well. But no, I have not been dilligent to that effect. I was concerned about candida. I just had my doctor call in a week of diflucan. I know I have to change my diet too. Can diflucan (flluconazole) cause a herx? Is it effective in at least helpful in killing off SOME of the candida if the diet is improved?
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elkielover80
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It took 3 months of doxy and zith to clear up the mycoplasm infection for me. I know for others it has taken even longer.

If you're taking binders to help detox then you should time them at least 2 hours away from abx so they don't bind with the abx and get rid the abx before your body can use them but generally speaking (and I am really generalizing this) most natural detoxing will help speed up the process of getting rid of toxins.

If you search past threads, there is a ton of great info on safe detoxing!

I second Lymetoo's reply about yeast. Are you on diflucan or anything to prevent/get rid of yeast?

--------------------
No tick bite/rash
sick Nov '09
diagnosed Mar '11
Doxy/Zithro
LOTS of supplements

Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED!

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aligatorali
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I am trying to learn to use this site... Not having any luck searching past threads...

Can anyone suggest natural detoxes?

I am going for glutathione injections (I am getting a kit from a local doc) for ten days worth, starting saturday. THis is HUGE when it comes to dexoxing, rom what I know. ALSO I am getting vitamin C IV's once a week for the next month, perhaps two. Antioxidant therapy is important. Water, hot baths, sweating, high fiber detox shake called Dr Schulzes formula with psyllium husk, charcoal, bentonite clay, apple pectin, etc)

I am trying so hard!! I will cut down on gluten, refined sugars, etc. And I dont drink alcohol.

Good info about the M. pneumoniae. A long course of zithro might help. I will start begging my doc soon. Do you think bactrim and ceftin are helpful for this as well?

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kidsgotlyme
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You can't just cut down on gluten. It just doesn't work. You need to totally cut the gluten out for a month or two. Then you can add in a bit of gluten and see if you notice any difference in how you feel.

Not everyone has a problem with gluten, but for many it makes all the difference in the world on how you feel. My daughter can't tolerate even one bite of gluten.

She can eat a little bit of sugar, but not much.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

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norcal
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Detox,good alkaline diet, gluten dairy sugar caffiene aspartame msg elimination , stress reduction, supplements,positive thought,prayer. This is my formula for success.
As far as herxing going on for awhile,I was pretty much out of it for a good six months with most of the symptoms you have.

Feeling like my soul was missing,confusion,reading difficulties,depression ,anxiety,the whole enchilada.

Doing much better now,hopefully this helps.

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aligatorali
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I just noticed the trend in paragraph breaks and line spacing. I understand and will be more sensitive to this in the future.

I went back and read one of my longer posts and couldnt keep my mind focused on one line.

Its the kind of you dont think about when you are typing. You dont notice until you're reading it.

Thanks to everyone for last night.

I think this has been dormant in my body for about 15 years. My son is 15 and tested positive on band 23 last month. I lived in CT 15 years ago.

Does this have to be lifelong? Is anyone here completely or near completely better who has had it undiagnosed for a while?

They say you dont start counting til you get sick. So I went about 7 months ill without treatment. Thats not insurmountable is it?

Alicia

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kidsgotlyme
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I don't think so. I think it would be hard for all of us to keep on going if we thought that there was no hope of getting better.

Lots of people do recover and go on to lead full and normal lives. Except for a few brave souls here, most people quit coming to the boards because they ARE well.

It just takes time.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

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t9im
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Hi Alagiatorali:

Band 23 is highly specific to the LB. Many LLMD's will use the band as a confirmation to their clinical diagnosis (from my reading of the lymemd blog - a LLMD who occasionaly posts some of his cases & opinions).

I would also not rule out Bart, due to some of your symptoms but of course Lyme and Bart symptoms can overlap.

You have had the LB too long for a mono thearpy to work.

AT the least you will need a cyst buster (Flagyl or Tindamax).

Unfortunately some drugs don't work for all (side effects, etc.).

I will try to post some vidoes tomorrow to help explain the controversy and mis diagnosis.

Yes you can get better, with time (and drugs).

I always relate to Dr. Jones story of Marina (the young blonde woman he is shown treating in Under Our Skin).

She was in a coma for two years. Parent brought her to Dr. J after and she was paralayzed from the chest down. In UOS you see her walking from the wheel cheer to Dr. Jones office (this took almost 2 years of treatments).

She was a patient for 7 years but is now in college and Dr. J indicates she is now well.

It takes longer than one thinks but some of the newer drugs like tindamax work well against the disease.

--------------------
Tim

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t9im
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Here is the LLMD's quote to a specific presentation.:

The 23 kd band is highly specific for Osp C. Many LLMDs are comfortable making the diagnosis based on this single band. Lyme is a clinical dx.

Everything sounds like classic Lyme. If I was going to use oral antibiotics I would pick Ceftin and Minocin. Minocin is reported to pass the blood brain barrier better than other oral antibiotics. Sometimes it works

--------------------
Tim

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aligatorali
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PLEASE HELP!!!

I feel like I have things crawling all over me. I am itching all over, ALL OVER. Everything itches, especially my scalp, back, arms and legs. It is intense and it is driving me mad.

Please tell me this can happen with JUST lyme, that it does not have to be morgellons. PLEASE!!!

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onlyflippin
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Earlier I mentioned my reaction to alleve. What I didnt mention is I havent taken alleve in years. I still get the same symptoms from time to time, I feel just like I took alleve. I am new at this ld thing myself but I believe it is a symptom that you get with ld. I hadnt even started taking abx yet when i had those symptoms. Mine come and go, I take showers and read or watch tv and it helps ignore. The showers are the best relief for me.

--------------------
Help I am being forced against my will to learn medicine!!!

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aligatorali
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Hello everyone

I am frightened!!!

The itching is all over me... I mentioned that already. I am beginning to get lots of teeny tiny black specks under my skin. They sometimes form in clusters. I dont want to think about morgellons. I have no fibers or lesions. Just itching, crawling and biting sensations.

Could this be a reaction to being on antibiotics for so long, or is this a symptom of a co-infection that I should be aware or?

If anyone out there has ANY info on this, PELASE HELP!!!

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payne
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you may find the answer in search..
many past members and elders here have left a wealth of info there...
good luck with your symptoms, hope you find a answer soon..

--------------------
TULAREMIA/rabbit fever ?

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HopesAlive
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I am no expert with what you are dealing with, but I did look up your symptoms, and I came up with something that they are calling, "black pepper mites." Google "black pepper mites," and see if anything rings true for you and also what might help get rid of the itching.

I have heard many people with Lyme mention the itchy crawling sensation, and I do believe it can be related to certain antibiotics, but again, I am treating with "naturals," so I have only read this before, not experienced it.

Research as much as you can about herxing and especially about detoxing. There are many ways for detoxing, some quite inexpensive and easy.

Also, I wonder if it is time to see a new doctor? LLMD who has a little more knowledge as to what you are going through?

I hope you find your answers, and I wish I could be of more assistance.

--------------------
Best Wishes,

Hope

"Hope is a good thing, maybe the best of things, and no good thing ever dies."

~~The Shawshank Redemption~~

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aligatorali
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Thanks, but these arent mites. I have black specks under my skin, that arent moles, because they vanish when I scratch them or tweeze them out.

The itching is intense. And all the lyme symptoms are back with a fury. I cant cope. DOES ANYONE KNOW OF A DOCTOR WHO TREATS MORGELLONS IN FLORIDA? PLEASE PM ME.

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Eliz428
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Ali, I can't comment on the other issues, but the eye problems can be very important to treat.

There's a condition called iritis that can potentially cause blindness if not treated and I got it about a year into treatment.

It requires steroids (don't worry even though everyone says avoid steroids with lyme...they are not as strong and your sight is priceless) and dilation for treatment.

Go to your opthamologist if the itching and spots continue. My llmd took me off meds until it resolved so that I could recover. I had itching and redness, almost like an allergy or pink eye, but no crusty eyes or excessive watering.

As far as the other, obviously I have no experience, but many of us develop MCS (multiple chemical sensitivities) which make even the lightest odors,or chemical additives cause ridiculous reactions. PM if you need more info. Best of luck. Don't stress

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Catgirl
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I'm no doctor but it sounds like you could have a combination of an allergic reaction, plus the lyme and maybe a co infection, plus candida. I'd listen to Lymetoo when it comes to candida.

I had the itchy feelings every night at first, then they went away. I also have crawling feelings on my head at night, but some nights I don't get them as much anymore(some improvement).

You might want to go to drugs.com to check on the side effects of ceftin too. I had problems on ceftin. http://www.drugs.com/sfx/ceftin-side-effects.html

Here is some info on ceftin from drugs.com below...

(Seek medical attention right away if any of these SEVERE side effects occur when using Ceftin:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); bloody stools; change in the amount of urine; dark urine; easy bruising or bleeding; fatigue; fever; seizures; severe diarrhea; stomach cramps/pain; vaginal irritation or discharge; yellowing of the skin or eyes.

Hang in there!

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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aligatorali
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Thank you ALL for your help, info, guidance, and

support. None of which is falling upon deaf

ears.

I would like someone to tell me the name of a

fantastic LLMD with a good success rate. I

understand I may have to leave Florida, but I'd

go to any state a this point.

PLEASE PM me with any referrals to docs you've

heard good things about. PS My next post will be

a fantastic bit of info I just found!

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aligatorali
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From Burrascano's Guidelines:

COMBINATION THERAPY
Treatment of chronic Lyme usually requires combinations of antibiotics. There are four reasons for this:

1. TWO COMPARTMENTS- Bb can be found in both the fluid and the tissue compartments, yet no
single antibiotic currently used to treat Bb infections will be effective in both compartments.

This is one reason for the need to use combination therapy in the more ill patient. A logical combination
might use, for example, azithromycin plus a penicillin.

2. INTRACELLULAR NICHE- Another reason, discussed below, is the fact that Bb can penetrate and remain viable within cells and evade the effects of extracellular agents.

Typical combinations
include an extracellular antibiotic, plus an intracellular agent such as an erythromycin derivative or metronidazole.

Note that some experts discourage the co-administration of bactericidal plus
bacteriostatic agents, thus the recommendation to avoid a cell wall drug combined with a
tetracycline.

3. L-FORMS (SPHEROPLAST)- It has been recognized that B. burgdorferi can exist in at least two,
and possibly three different morphologic forms: spirochete, spheroplast (or l-form), and the recently discovered cystic form (presently, there is controversy whether the cyst is different from the l-form).

L-forms and cystic forms do not contain cell walls, and thus beta lactam antibiotics will not affect them. Spheroplasts seem to be susceptible to tetracyclines and the advanced erythromycin
derivatives.

Apparently, Bb can shift among the three forms during the course of the infection.
Because of this, it may be necessary to cycle different classes of antibiotics and/or prescribe a combination of dissimilar agents.

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racer
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You might try some benadryl for the itching (if you haven't already) - or ask your doctor if you can try neurontin. It is used for neuropathic pain - and the itching could be neuropathic in my opinion (nerve endings going wild).

racer

--------------------
Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive
Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+)

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glm1111
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aligatorali,

First of all Morgellons is just a name someone came up with. Most if not all of these people have been dx with Lyme disease.

I have had all of the symptoms you are describing along with the black specks. Try and calm down. There is a co-infection of Filarial Worms that can be causing this.

I am almost in remission with the use of antiparasitic herbs and salt/c. I also took coconut oil and alternated with kefir. Digestive enzymes were beneficial (Super Digestaway by Soloray)

Parasites can play a MAJOR role in Lyme disease and quite a few people on here are becoming aware of this. Dr. K. treats ALL of his patients for parasites.

I hope this helps you and PLEASE stay calm and focused so you can get well.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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aligatorali
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Gael: I sent you a PM with my phone number. I am especially interested in this because I was in Peru for a few weeks last August....

Also, I dont think these skin worms show in the standard Ova and Parasite stool screening.

I think they really have to see eruptions and severe rashes to take it seriously. Maybe thats why I had no luck with the dermatologist.

I will be going to a new LLMD in Destin, FL, and hope that he will take me seriously.

I was wondering if you had the crawlib/biting sensations and also what antiparasitic treatment you are taking, and if you have any eye floaters, etc.

Hope we can chat.

Thanks

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glm1111
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just sent you a pm

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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aligatorali
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Desperate!!! The itching is in my eyes, all over my body, my insides are literally crawling, and I feel a hysteria coming over me. I am feeling little stings or bites all over me with the itching, and I cant sit still. What the HELL is happening to me???????????????????????
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