LLMDs: I need help!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 3/13/2010 1:44 PM (GMT -7)   
I am very sorry that I have not been on here for so long -- honest to God, I've prayed for everyone on here.  Regardless of what we all know and believe, I really thought I could have beat this w/ high doses of Amox.  And I kind of felt like I needed to step away from the constant obsession of Lyme research and thinking about this danged Lyme.
 
 And a lot of stuff is better.  And now, some stuff is worse.
 
It is entirely possible (I think) that I have kicked the lyme itself, I don't know. What I am left with are recurring periods (usually every afternoon) of unbearable depression, that come on suddenly and swiftly. Given my other symptoms (I already know my thyroid is low), I think a lot of my symtoms might be due to adrenal fatigue.
 
What is anyone's opinion about the possibility of being cured of Lyme, but the need to treat some damage that the Lyme caused?
 
Can anyone please remind me who I can email to look for LLMDs in my area?  I am completely wiped out, financially and otherwise. I have nothing left and am declaring BK.  I must find a Dr who takes my insurance.  
 
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 3/13/2010 2:28 PM (GMT -7)   
Yes, it is possible to have some repair work left after beating Lyme/coinfections. But are you sure you are done with the coinfections?

I know there is someone at open Eye Pictures who can tell you about LLMD's in your area...try info@openeyepictures.com

ILADS.org may also be helpful to contact about LLMD's in your vicinity.
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/13/2010 7:58 PM (GMT -7)   
+Lyme,

I have been thinking of you and have been wanting to post here to see how you were doing. Do you have an email you can share with me so that I can check on you when you go missing? lol If you want to share email, just send it to me through my profile here.

I agree that there is damage after dealing with Lyme. Our bodies sometimes try to attack the Lyme bacteria, but since it hides so well, it attacks our tissue, bones, etc. instead. So, yes, I think there could be damage. I think that is what I am dealing with now as well.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 3/13/2010 8:41 PM (GMT -7)   
If you email me I will send you links to where you can find LLMD's in your area or close by.

Gary

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 3/14/2010 8:55 AM (GMT -7)   
Thank you, everyone.  Thank you for kind and caring words. I promis you I am pulling for everyone.
 
Razzle, no I really have no reason to believe any possible co-infections were even addressed.  My test showed babs, was not tested for Bart; and RMSF & ERLIC were negative, altho these were just titres test and the LLMD said not reliable.  So I just don't know what to think about the co-infections.
 
My daughter in law took a trip to Ethiopia and had to take Doxy for several weeks prior and after as a preventative for malaria. WEll, since Babs is a malaria-like protazoa, might Doxy not be effective against Babs?  I had a few weeks of Doxy (as a preventive for Rocky Mt after a new tick bite)  I know that most of you believe Babs is much more difficult to kick, but a girl can dream....
 
CajunGrl, thank you so much for your concerns, but please do not worry about me. I will send you my email, tho, OK? I believe that all of you are suffering so much more than I am, at least at this point and it is so discouraging to see so many of my 'old' pals on here, still fighting this rat bastrd.
 
I know that the Amox did something -- I don't know for positive that it succeeded, but I did go thru a period that the Lyme was either gone, or gone into C form or hiding.  But recently, and only now and then, I'd fear it was creeping back up -- I'd get that throbbing, aching, buzzing feeling. But it's never set in or taken hold. So I don't know. Maybe the Amox enabled my immune system to fight?
 
But, oops, just remembered:  I have red things all over my body. REd spots. Some are scaly, some are just marks. All over my arms and legs. I recall something like that in late lyme back when I was researching...
 
I know my thryroid was/is low and I haven't been treated for it and need to get into a Dr. I am also 99% positive that I have adrenal problems, after researching that. And I believe that is possibly what is causing the unbearable depression that visits almost every afternoon, bringing that nasty 'S' word along w/ it. I have every symptom of that and the LLMD I saw last summer noted that on my blood test. But he gave me a script for something weird that was extremely expensive and I did not fill it. 
 
I can't tell you how many days that, if I didn't have dogs, I would have checked myself in to some kind of hospital -- that's how messed up I've felt. And I know that it is physical. It comes on suddenly w/ no explanation and it is literally unbearable.
 
 JY Willy -- where are you? I am in Shawnee, KS.  As I said, I have no more $$. Nadda. Zilch. I am declaring BK mostly so I can start building a little bit of a savings acct in case of emergency or vet emergency. A dental emergency and vet emergency set me over the edge and I'm literally wiped out.
 
I have been on a local LLMD (who takes my ins) waiting list for a year now.  So I'll keep waiting. Meantime, I'll at least get in to a new PCP in hopes of treating the adrenal/thyroid.
 
I believe that if I weren't hypglycemic, I might be anorexic (but still overweight because of thyroid). I have no interest in food (except breakfast) and hardly ever feel like eating.  I get kind of aggravated when I feel the need to eat, because I don't want to mess with it.
 
I still feel like the Lyme is possibly gone. I understand it usually sneaks back up, but I want to think positively on this -- much of my energy has returned and I don't have that constant sick feeling. My neck and back pain are still bad, but I believe the Lyme damaged them and there may never be improvement, unless I try some yoga or something.
Meantime, I still megadose C, D, garlic and take a bunch of other vites.
 
GWB, I will email you for a list of local Drs, OK?
 
I cannt respond to everyone on here, even tho I do read your posts and I do care. I am pulling for all of you!  And I would like to say that I do believe that Amox, if you can take it, is effective. I suffered while on it, either depression caused by the Amox, or was herxing. I got relief when I stopped, so who knows?  I realize that we are all different.
 
I also want to let everyone know that we are not the only ones in this crappy medical boat.
 
My father has been ill for over 2 yrs now and the Drs say they can't find anyting wrong.  And my daughter has 1 leg that keeps swelling up and causing pain -- this has been going on for months. She has wasted money at the ER when they did nothing for her. Been to her regular Dr, who sent her to a vascular surgeon who ordered 3 different MRIs, but has never returned her calls regarding the results. She is to go back to this Dr to remove a lump under her armpit which she has had for at least a year and none of the Drs will even bother examining it.  She went to this 'specialist' because of this lump, and another one that was infected in her groin area.
 
This Dr never examined either lump, never looked at them. The Dr was with her literally about one and one half minutes regarding the lump ('probably an ingrown hair infection') in her groin,  and she had to call the Dr back to her (as she was walking out the door) regarding the lump under her armpit.  When she did this, the Dr barely turned around to say, 'The abx I'm giving you will take care of that as well.
 
 None of the Drs communicated w/ another, none of them tried to put anything together.
Lumps near lymph glands, swollen leg, hmmmmmm.... We finally got the idea she needs to see an edema specialist --  perhaps lymphodema -- this, after about 6 months of nothing. And we are figuring this out, NOT the Drs!
 
It is not just Lyme. It's everything. It's all a mess!
 


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 3/14/2010 10:35:42 AM (GMT-6)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/14/2010 10:01 AM (GMT -7)   
Hey Lyme,

I got your email and will be writing you back later. I'm trying to do a little cleaning since I feel pretty good today. So much has been neglected since I've been sick.

I wanted to tell you that a low thyroid can cause depression. I notice that when mine is low, I get this very weird feeling....a scary feeling that comes over me. It's very hard to explain and it is very scary. It feels really dark. That's the only way I can explain it. I have no control over it. I seriously hate it. I know it has something to do with my thyroid though because it only happens when it's low. You really need to get on medication because it's important. Your thyroid runs many things in your body and you would probably feel so much better. Armour thyroid is more natural and works really well.

I have all the symptoms of adrenal fatigue too and have been on a low dose of hydrocortisone for a few weeks now. Let me tell you that I have been feeling alot better and I even have energy. No doctors would listen to me when I would mention it. For years I've felt really bad. I finally found a great doctor. She's an internist and she listened to what I had to say.....finally! She's sending me to a rheumatologist to run further tests.

Anyway, enough babbling. I will talk to you later.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


mother natures child
Regular Member


Date Joined Oct 2009
Total Posts : 231
   Posted 3/14/2010 10:04 AM (GMT -7)   
Is there a LLMD anywhere that will take insurance?????????????????
 I am a Zebra


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/14/2010 10:06 AM (GMT -7)   
There aren't many. The one I see in Florida still takes insurance but not sure for how much longer.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 3/14/2010 10:44 AM (GMT -7)   
MOthere nature's Child: There are Drs knowledgable of Lyme, but they are hard to find and most are overbooked. As I said, I've been on 1 waiting list for a year now.
 
CajunGrl:  the feeling and the depression that overtakes you sound so much like mine. It is literally unbearable.
 
 I HAVE to select a new Dr. (PCP) Last year, I started w/ a PCP who knows enough about Lyme to order a Western Blot and a few other tests like thyroid.  He did not know enough to diagnose or treat (I'm not putting him down -- he admits to not being qualified on Lyme) He knew enough to refer me to an LLMD.
 
 I went to this LLMD twice (no insurance) who ordered another western blot, which the lab neglected to do, the CD57 and other hormone tests, amongst others. He is the one who gave me 2 months of 3500/day Amox. I could not afford to see him again, or get the further tests he ordered, not covered by ins.
 
After much begging, The Lyme Ass. of Greater KC gave me the name of a practice covered by my insurance 'that was knowledgable of Lyme". I had to get my PCP changed to go to him. He was horrible and I have no idea where this referral came from, nor did he. In fact he laughed in my face. He said no one there was knowledgable of Lyme because Lyme is so rare.
I asked him, why, if it is so rare, are all the Lyme Drs overbooked. He had no idea. He would not listen to me and went off on his own tangent.
 
So, CG, this is my question for you, until or in case I never, find an LLMD, (say, Lyme aside) -- I've got to get in to see someone about my thyroid and adrenals. Should I choose a new PCP (I liked the first one) or find a specialist, like an internal med DR, as  you mentioned?  I can see a specialist w/o changing Drs under my insurance and w/o a referral, it just costs a little more.
 
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/14/2010 1:40 PM (GMT -7)   
It is probably best that you see a specialist. The endo I see wasn't helping me or listening so that's why I talked to my internist. Internists know about the thyroid but in my opinion, not as well as a specialist.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 3/14/2010 1:57 PM (GMT -7)   
CG: I'm sorry, I'm confused. I'm not going to an endo (she didn't even want to treat my thyroid). And you said your internist listened to you, but then you said internests don't know the thyroid as much as a specialst. I was thinking of an internist as a 'specialist'. Am I confused? So what kind of specialst should I try to see for thyroid/adrenals?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 15, 2017 11:01 AM (GMT -7)
There are a total of 2,905,784 posts in 318,890 threads.
View Active Threads


Who's Online
This forum has 158241 registered members. Please welcome our newest member, Jmonte19.
357 Guest(s), 11 Registered Member(s) are currently online.  Details
RedKoolAid, Hoagie, Girlie, Starlight*, Skypilot56, Tudpock18, Samura, gabybee, MacroMan, Tall Allen, iPoop