I've been experiencing several strange symptoms and all normal tests results for everything since November 2017. This all started after I had an itchy spot on my inner thigh that some doctors said looked a lot like a bug bite.
My symptoms: -pubic area irritation, itch, rash -watery vaginal discharge -spotting in between periods -irregular menstrual cycle -rashes on torso -hair thinning -feeling like I have a fever but temperature actually below average -clumsiness, less articulate, some word recollection difficulty -easily exhausted -extremely sensitive skin, almost starts bleeding when scratched. Irritated by clothing -swollen feet, blister far more easily -round puffy face -feeling of burning skin, nerve pain -back and neck pain -fatigue -muscle aches usually in groin/pelvic area -anal itch,fissures -occasional tinnitus -legs constantly falling asleep -feeling of a sore throat coming on but not actually sick -weight gain -sugar cravings -bug crawling sensations on skin This symptoms come and go, many of these caused issues for me before and have now stopped but my body has moved on to other symptoms.
I've been tested for so many things including EBV, West Nile, thryoid function, STDs...
I still need to be checked for mycoplasma.
I even had 2 skin biopsies done from my groin that found nothing but "inflamed skin" that my dermatologist said was hyper dermatographia. Antihistamines did nothing for this, and she admitted maybe the diagnosis was incorrect.
The only out of the ordinary results I've had is relatively low ferritin and vitamin D.
I test negative for the Lyme EIA (unsurprisingly) and negative for bartonella last time I was back in Canada. I asked for a CD57 but it wasn't a count, it came back as 6.4% and I'm not sure what that means.
I'm not sure what to make of my Western Blot Igenex results that just came back:
IGG: 31 + 41+ IGX indeterminate, CDC negative
IGM: 41: Ind 58: + IGX negative, CDC, negative
I'm not sure about these results. I know 31 and 41 are important and usually lyme-specific bands but I was surprised to see more bands weren't positive. The results say in my case I should get test 488 as confirmation.
I'm moving home near Toronto, ON next week. I've heard treating lyme is almost impossible in Canada so I would probably have to go across the boarder.
Does this sound like lyme? What should I do next? Please help! Thank you!
Posts: 5 | From Ontario, Canada | Registered: Jun 2018
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Some very positive news came out of Canada just last week about Lyme & co. I can't seem to find the news item but I'll keep looking for it to post.
So things are changing there. Based on your symptoms and those test result, you are in need of treatment.
A couple things made me think about parasites with that bite but also mycoplasma could be the cause for genital itching and some of the other skin issues.
Do a search on Ontario Canada Lyme and the news you will see some positive things. Also I know there is an Ontairo Lyme support group too.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Do you think the possibility of parasites and mycoplasma are a coinfection of lyme or do you think this may not be lyme at all and I may just have a parasite and mycoplasma issue? Are parasites and mycoplasma common coinfections of lyme?
Is it possible that my 31 and 41 bands were cross reactions from something else that i might have? Do you know if mycoplasma can do that?
Thank you, I will look into recent news in Ontario about Lyme.
I appreciate your help!
Posts: 5 | From Ontario, Canada | Registered: Jun 2018
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IMO, I would invest in a LLMD to get some answers. You DO have Lyme specific bands and you DO have Lyme clinical symptoms. Start researching everything you can on Lyme and co-infections. You MUST become your own health advocate.
Start a folder with all blood work, testing, medical professionals visited, procedures. This saves time and money. Get your finances in order, Lyme treatment is expensive. Connect with Ontario Lyme Facebook for ideas on how your area's Lyme patients treat. Ask questions and fight for health Exhausted Girl. We will help you through our experiences with the medical mainstream maze. Good luck.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Antibody bands #31 and #58 are Lyme-specific bands. Many feel that if even one Lyme-specific band shows up, it's enough.
Posts: 13116 | From San Francisco | Registered: May 2006
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
IIRC Igenex has an epitope test for band 31.
Years ago band 58 was not considered Lyme specific. Now it is? I tested four times with Igenex - band 58 showing up a few times - so always wondered.
To add: I also had band 31 show up - followed up with the epitope test. Looking at my sig. line - I didn't list band 31 - (or band 30) due to epitope test results.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
Thank you so much for your replies. I truly appreciate it.
Here is the latest on my situation: I've moved back home to Canada and my doctor here let me know that I was reactive for Rocky Mountain Spotted Fever IgG and Murine Typhus IgG. She doesn't really know how to help me anymore, so I have an appointment with an Internal Medicine doctor July 9.
I wanted to ask for mycoplasma and candida tests today but she said to request it from the internal medicine doctor.
Any idea what this means for me? According to the link that BartenderBonnie mentioned, Rocky Mountain Spotted Fever can cause band 41 to be positive, which mine was. Does that mean that this might not be Lyme but Rocky Mountain Spotted Fever? Or both?
I called Igenex and they still have my blood so I'm requesting the Epitope confirmatory test from the doctor that helped me with the requisition in the first place. Hopefully that will give me a straight answer.
Thanks for any help!
Posts: 5 | From Ontario, Canada | Registered: Jun 2018
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posted
Good job!! Treatment for Lyme and for RMSF are pretty similar. You could easily have both. I think the tests for RMSF are more accurate since I do hear of a lot of people here in MO testing positive for it.
So .. make sure you get plenty of treatment for it. You will probably have to keep after them.
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
[---- from DR C's update from 2005 ---
----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Hi all... I'm back with some updates. My Epitope test for band 31 came back positive from Igenex.
Unsurprisingly, the internal medicine doctor didn't even want to look at my Igenex results and said that everyone comes back positive from that lab. He seemed to think that my family doctor had prescribed too much of an anxiety medication that I've been taking for years and it's catching up with me now. He also said the images I had of what I think is a bug bite on my inner thigh are eczema-- ya right. He ordered more tests to be done and I'm going back in on Monday.
Also wanted to note-- he mentioned that my positive Rocky Mountain Spotted Fever and Typhus results were IGGs and the positive ratio was very low, not IGMs. He says I may have been exposed to these in the past but am not currently suffering from it. Thoughts on this?
I've reached out to some places to potentially get treatment in the US (I'm in Canada) but the waits are so long. I'm supposed to be moving back to California in October and it doesn't really seem like it makes sense to start treatment in NY in September (that's the earliest I can be seen).
I'm at a loss and I feel so stuck, like no doctors can help me or even care about my very real concern of Lyme disease.
I live in discomfort every day but I wonder if I'm not sick enough to have Lyme.
Do all doctors take months before the first appointment? The idea of continuing to live like this until I move back to California is very discouraging. I miss my old life.
Posts: 5 | From Ontario, Canada | Registered: Jun 2018
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posted
I am so, SO sorry for what you are going through. The majority of doctors don't know what to do with patients that don't fit the status quo. I think you've gotten a lot of good advice from others so far. I would get to a Lyme literate doctor ASAP as you've caught it earlier than most and will have a better chance of healing.
In the lecture he will explain that when someone's body is under attack, they may be so overwhelmed that antibodies will not show up because spirochetes are suffocating out your defenses so much they don't register. At the Sophia Institute they have their own methods for testing, but Dr. K mentions much better tests that are available in Europe- not sure if we can get them here in North America.
posted
The internal medicine doctor who looked at your results is not Lyme-literate - not everyone comes back positive from IGeneX - it's a matter of whether antibody bands show up or not.
CA has Lyme doctors! I am PMing you -
Some comments on symptoms -
Irregular periods are typical with Lyme - it affects the HPA axis. Medication needed. Oddly enough, a cranial adjustment once caused my period to start again!
Exhaustion can be from magnesium depletion, needed to make ATP. The Lyme bacteria use it up. Most of us take a mg supplement daily.
Pain - I have found that taking turmeric capsules relieves joint and muscle pain. I get it in bulk at the healthfood store and dip empty 00-size capsules in it and take one in the am and pm. Very simple and cheap.
I had tight pelvic muscles before I found out I had Lyme. I stretched them all out in a swimming pool for nine months and restored them! Then found out a year and half later I had Lyme.
Re sugar cravings - suggest you take a look at symptoms for candida. If so, then I suggest a step-down diet - cut out sugar but keep sweet fruit till you get over the sugar cravings. Then drop the sweet fruit and eat vegies and lean meat.
This is just for a certain amount of time, like a couple months at least, to get the yeast load down, then later on we can add fruit back into our diet.
My candida doctor allowed me to cheat once a week while I was doing this, but I had the fortitude to handle a cheat day and get back on the diet the next day. If we lose it on a cheat day, don't sugar cheat!
Take Vit D if you're testing low. Liquid Vit D NOW drops are ok.
[ 08-10-2018, 02:05 PM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thank you for your support! Super helpful and going to take this advice for sure. I want to get my magnesium levels checked too.
My skin gets super inflamed waist down and burns/turns red when pressure is added but my CRP is totally normal. I don't understand... don't Lyme patients typically have elevated CRPs?
I have had boatloads of tests done and everything is coming back completely normal. Not sure what to make of it.
Posts: 5 | From Ontario, Canada | Registered: Jun 2018
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posted
It's typical for us to test normal. That's because tests are not looking for bacteria.
Posts: 13116 | From San Francisco | Registered: May 2006
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