Lyme or some other bacteria/fungus/virus? My hate for doctors has increased.

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Johan
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/15/2009 3:35 PM (GMT -7)   
I've read the symptoms and some people are different but I feel more comfortable at least asking directly peoples' thoughts on the matter.

Firstly, I'm 22. My symptoms started on the December 08, 2008. A week and a half prior to this, I would for the first time in my life start getting one leg jerk right before I fell asleep.

So on the 8th, I randomly felt a heaviness or tightness in my both my right and left forearms. In addition, I got a strange empty feeling in my calves, as if not enough blood was reaching them.

My symptoms over time however have changed. There has not been a feeling my calves for a month but rather a ticklish/sensitive feeling on the inside of my ankles along with the front of my feet that come and go. The feeling of tightness/heaviness is less of my forearm for the past two months but more in my wrist and my hand. The feeling inside my hands at times is sensitive on the inside and if I relax my wrist/hand in certain positions, certain fingers will shake.

At random points now I get a mild numbness in my lower right palm into my base of my pinky finger which eventually subsides. Every couple weeks, my hands get randomly pretty cold for no reason as well. My symptoms always feel worse in the morning, especially around my kneecaps and thighs.

So, when I first went as an inpatient I had abnormally low vitamin d. Of course, doctors as many are looking for a quick diagnosis said "Low Vitamin D levels, get out of here". Ok then I guess. Did a blood test a short while later and Vit D was normal.

I saw the first neurologist who literally told me in a nutshell "You're getting older, I have old patients with a ton of weird symtpoms so take some advil." I could not beleive he compared a 22 year old male to the problems elderly get which he probably even had a touch time diagnosing. He tested me for the usual neurological bad diseases and I was fine. He did an EKG and I was fine. So I went for a second opinion.

The second neurologist basically was only looking that I had MS as he himself had MS. When I didn't all he offered me was "It will probably go away and it's not MS. See ya!" Ok...so onto the neurosurgeon.

My final visit with a neurosurgeon was pretty quick. He basically just looked at my back and said everything was fine however he did assume that all of this was due to a virus (wow, one ambiguous diagnosis, hurray!) He then left, not even leaving me an idea of where to go or what viruses could cause this.

I then went to a Rheumatologist who took some tests and didn't see anything too crazy. I then went to a second rheumatologist with the same type of story.

Some IMPORTANT side notes are:

I moved into a new apartment in October so who knows what is/was in here.
I inhaled two times liquid from China. Before you go "huh?" there is a device called an e-cigarette. Basically, it vaporizes liquid in a device which looks like a cigarette and acts like a cigarette. The liquid however came from China. I inhaled this two or three weeks before my symptoms began.
I have had a rash that comes and goes due to bacteria on my chest. Sometimes it spreads to half of my chest so I half to put ointment on. I have a skin virus that does not go away in one area and will need plastic surgery.

So after all of this I am left with nothing, no doctor really cares. Heck, I even went to a hypnotist but am utterly lost. I don't know if it will be a waste of time to see a Lyme doctor as I am not 100 percent sure this is Lyme. I don't even know if these is such thing as a doctor who is knowledgeable (if it's not Lyme) with odd viruses or fungus or just bacteria/infections.

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 4/15/2009 4:01 PM (GMT -7)   
What kind of skin vius is on your chest? Anything that attacks the skin can be systemic. Do they know what virus is causing the skin problems? D

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 4/15/2009 4:24 PM (GMT -7)   

I've been at this f o r e v e r, so if I may so boldly answer some questions within your post in red.  But, before that, please find a GOOD Infectious disease doctor who is literate in Lyme disease and/or at least willing to test you for Lyme Disease.  Insists on using Igenex Lab in California.  It's a simple 2 or 3 tier blood test.  The will tests ELISA and if that is positive, then they will test your IGG and then IGM levels.  Sometimes, if the ELISA is negative, labs just skip the rest of the test.  Lyme disease testing is still precarious at best, so even a negative can be "wrong"...... this disease sucks wind.

 

Johan said...
Firstly, I'm 22. My symptoms started on the December 08, 2008. A week and a half prior to this, I would for the first time in my life start getting one leg jerk right before I fell asleep. So on the 8th, I randomly felt a heaviness or tightness in my both my right and left forearms. In addition, I got a strange empty feeling in my calves, as if not enough blood was reaching them.
In the beginning all of the symptoms are "bizarre" and out of the ordinary.  You don't know if it's a qwerk thing, or if your making too big of a deal about something.  I think we all start off this way.

My symptoms over time however have changed. There has not been a feeling my calves for a month but rather a ticklish/sensitive feeling on the inside of my ankles along with the front of my feet that come and go. A symptom of LD is that the symptoms continue to change and move around.  The feeling of tightness/heaviness is less of my forearm for the past two months but more in my wrist and my hand. The feeling inside my hands at times is sensitive on the inside and if I relax my wrist/hand in certain positions, certain fingers will shake. Please be checked for other diseases like Parkinson's.... but don't ignore any LD testing.  I have had sever bouts of carpal tunnel as a part of my myriad of LD symptoms over the years.

At random points now I get a mild numbness in my lower right palm into my base of my pinky finger which eventually subsides. Every couple weeks, my hands get randomly pretty cold for no reason as well. This may be something called "Renaud's".  It happens to a lot of LD patiets.  fingers and toes freeze and turn white.  My symptoms always feel worse in the morning, especially around my kneecaps and thighs. This is how my symptoms began.  In the knees and hips.

So, when I first went as an inpatient I had abnormally low vitamin d. Of course, doctors as many are looking for a quick diagnosis said "Low Vitamin D levels, get out of here". Ok then I guess. Did a blood test a short while later and Vit D was normal. I believe a Vit D deficiency can be addressed by approx  20 minutes in the sun.

I saw the first neurologist - So I went for a second opinion. - onto the neurosurgeon - My final visit with a neurosurgeon  - went to a Rheumatologist - I then went to a second rheumatologist with the same type of story.
 
And finally, if you've seen way too many doctors with absolutely no medical direction.... you probably have LD.  I was sick for 13 months before I was finally tested for LD.  It was positive.  The very next dr. I saw said it was a "false positive"...... 4 months later, when I found a doctor to treat me, he wrote me an RX for 200mg doxycicline 2x a day.  13 months of pure h*** for doxycycline!

Some IMPORTANT side notes are:

I moved into a new apartment in October so who knows what is/was in here.
I inhaled two times liquid from China. Before you go "huh?" there is a device called an e-cigarette. Basically, it vaporizes liquid in a device which looks like a cigarette and acts like a cigarette. The liquid however came from China. I inhaled this two or three weeks before my symptoms began.
I have had a rash that comes and goes due to bacteria on my chest. Sometimes it spreads to half of my chest so I half to put ointment on. I have a skin virus that does not go away in one area and will need plastic surgery.

So after all of this I am left with nothing, no doctor really cares. Heck, I even went to a hypnotist but am utterly lost. I don't know if it will be a waste of time to see a Lyme doctor as I am not 100 percent sure this is Lyme. I don't even know if these is such thing as a doctor who is knowledgeable (if it's not Lyme) with odd viruses or fungus or just bacteria/infections.
Please get tested for Lyme disease. 
All the best.

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


Johan
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/15/2009 4:34 PM (GMT -7)   
Dowa said...
What kind of skin vius is on your chest? Anything that attacks the skin can be systemic. Do they know what virus is causing the skin problems? D


Forgot the name of it but it's a bacterial fungus that started around maybe 2 years ago. As for the virus portion...I originally had a very small wart on my hand. The dermatologist then used whatever they used to freeze it off. However, it came back instead in a odd way. I then had in the same area a ring of small skin protrusions forming a circle. Eventually, one doctor told me that it is a virus that refuses to go away after trying to rid it after similar treatments.

Johan
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/15/2009 4:40 PM (GMT -7)   
JELAINEP said...





Johan said...

Firstly, I'm 22. My symptoms started on the December 08, 2008. A week and a half prior to this, I would for the first time in my life start getting one leg jerk right before I fell asleep. So on the 8th, I randomly felt a heaviness or tightness in my both my right and left forearms. In addition, I got a strange empty feeling in my calves, as if not enough blood was reaching them.

<FONT color=red>In the beginning all of the symptoms are "bizarre" and out of the ordinary. You don't know if it's a qwerk thing, or if your making too big of a deal about something. I think we all start off this way.


My symptoms over time however have changed. There has not been a feeling my calves for a month but rather a ticklish/sensitive feeling on the inside of my ankles along with the front of my feet that come and go. The feeling of tightness/heaviness is less of my forearm for the past two months but more in my wrist and my hand. The feeling inside my hands at times is sensitive on the inside and if I relax my wrist/hand in certain positions, certain fingers will shake. <FONT color=red>Please be checked for other diseases like Parkinson's.... but don't ignore any LD testing. I have had sever bouts of carpal tunnel as a part of my myriad of LD symptoms over the years.

At random points now I get a mild numbness in my lower right palm into my base of my pinky finger which eventually subsides. Every couple weeks, my hands get randomly pretty cold for no reason as well. My symptoms always feel worse in the morning, especially around my kneecaps and thighs. <FONT color=red>This is how my symptoms began. In the knees and hips.

So, when I first went as an inpatient I had abnormally low <A class=iAs style="FONT-WEIGHT: normal! important; FONT-SIZE: 100%! important; PADDING-BOTTOM: 1px! important; COLOR: darkgreen! important; BORDER-BOTTOM: darkgreen 0.07em solid; BACKGROUND-COLOR: transparent! important; TEXT-DECORATION: underline! important" href="#" target=_blank itxtdid="8348043">vitamin d</A>. Of course, doctors as many are looking for a quick diagnosis said "Low Vitamin D levels, get out of here". Ok then I guess. Did a blood test a short while later and Vit D was normal.

I saw the first neurologist - So I went for a second opinion. - onto the neurosurgeon - My final visit with a neurosurgeon - went to a Rheumatologist - I then went to a second rheumatologist with the same type of story.



<FONT color=red>And finally, if you've seen way too many doctors with absolutely no medical direction.... you probably have LD. I was sick for 13 months before I was finally tested for LD. It was positive. The very next dr. I saw said it was a "false positive"...... 4 months later, when I found a doctor to treat me, he wrote me an RX for 200mg doxycicline 2x a day. 13 months of pure h*** for doxycycline!


Some IMPORTANT side notes are:

I moved into a new apartment in October so who knows what is/was in here.
I inhaled two times liquid from China. Before you go "huh?" there is a device called an e-cigarette. Basically, it vaporizes liquid in a device which looks like a cigarette and acts like a cigarette. The liquid however came from China. I inhaled this two or three weeks before my symptoms began.
I have had a rash that comes and goes due to bacteria on my chest. Sometimes it spreads to half of my chest so I half to put ointment on. I have a <A class=iAs style="FONT-WEIGHT: normal! important; FONT-SIZE: 100%! important; PADDING-BOTTOM: 1px! important; COLOR: darkgreen! important; BORDER-BOTTOM: darkgreen 0.07em solid; BACKGROUND-COLOR: transparent! important; TEXT-DECORATION: underline! important" href="#" target=_blank itxtdid="8157639">skin</A> virus that does not go away in one area and will need plastic surgery.

So after all of this I am left with nothing, no doctor really cares. Heck, I even went to a hypnotist but am utterly lost. I don't know if it will be a waste of time to see a Lyme doctor as I am not 100 percent sure this is Lyme. I don't even know if these is such thing as a doctor who is knowledgeable (if it's not Lyme) with odd viruses or fungus or just bacteria/infections.


<FONT color=red>All the best.


Thanks for the lengthy reply. The neurologists looked for what you noted above and I guess the above said wasn't remarkable to them. If someone can PM a infectious doctor(s) in CT (( live in Farmington in Central CT)who is lyme literate I would GREATLY appreciate it. I am only 4 months into this but I am not going to let this garbage invade my life. I am willing to travel too up to NYC or in Mass to see one as well but of course, it would be most convenient to find an infectious lyme literate doctor.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 4/16/2009 6:23 AM (GMT -7)   
When in doubt a simple diagnostic tool for lyme disease is a round of doxycycline. If you feel much worse, you are probably herxing , which is caused from toxins released by the dying bacteria overwhelming your liver and kidneys creating inflammation in your body. Doxy is a relatively safe abx without many side effects. If you see an LLMD, this is what he would probably do. You could also order online an herb, like Samento, to see if it causes you to herx but it might take longer and not be as noticeable.
Lyme can mimic many other diseases. The symptoms wax and wane and move and change depending on which part of your body is under attack. There are also many co-infections you can get from tick bites which are very serious like bartonella and babesia.
I am also fed up with doctors. I hope you find one that is capable of helping you. In the meantime, help yourself by being proactive. I diagnosed myself online - I had the EM rash which is 100% conclusive. I don't think there is anyone you can trust to just fix it for you. You have to research, investigate and through trial and error find what you have and how to treat it. Believe your gut feelings, trust your instincts and never give up.

mattylou
New Member


Date Joined Apr 2009
Total Posts : 9
   Posted 4/20/2009 8:39 AM (GMT -7)   
Johan, I hear you with disgust at doctors who say ridiculous things ("you're getting older" to a 22 year old!) or are just plain baffled and uninterested in exploring what your problems might be from. I am now 52 but was in my 20s when my weird symptoms started showing up out of the blue (food and environmental allergies, seizures, fatique, etc).

I was just diagnosed with Lyme and Bart a few months ago, and finding the doctor who finally recognized my health picture was just sheer dumb luck! So I encourage you to find a good Lyme literate doctor and find out what's up. If it's not Lyme, at least you'll know that much. Since you are willing to travel to NYC, I can recommend Dr. Zhang as someone you might want to speak with at some point. I don't know that he does the testing, though, and he's strictly herbal, but well versed in Western medicine. (and being Chinese, maybe he'll have some experience with that inhalant stuff you used? At any rate, be sure to tell your doctors about that too. Don't hold anything back in trying to regain your health.)

But I'm also sure you can find a good LLMD in CT or nearby. The Lyme community doesn't post names online because the doctors can be hounded by the medical establishment for treating Lyme. Someone with more experience here can probably tell you exactly how they got in touch with their LLMD, but if you go to chroniclymedisease.com they have several net referral addresses there.

The important thing is to keep pushing, keep trying to find the answers. In the meantime, don't underestimate taking good care of yourself--healthy diet, proper rest, etc... And listen to your inner wisdom--it frequently calls out the BS that doctors want to hand us! I wish you all the very best in your mission to be healthy.
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