No worries! I would say “ bombing and rotation treating both I think the worst was co-infections! LLMD said it’s the co’s that get ya! I got that about 6 years in! I think I slowly lost symptoms - I...
I had all DX too POTS, AGland <, et al, I am 1000% better took a long time and lots of 💴! I developed autoimmune HypoThyroid. I checked rechecked Addrenal G POTS, etc. Pituitary Gland Def ,Headaches...
Exactly-LLMD’s had me try many different ABXs and Anti Parasitic’s for years! Relapse :Remit repeat. If I stopped IV’s, w/in hours symptoms. Got port, HH Nurse &I would verify IV.s delivered 2 hours...
I don’t think the journey could have been shortened b/c docs wouldn’t communicate wLLMD, Insurance fight too!...
Hey Girl(ie)I saw DC Doc 3 other LLMD’s paid for everything cash for >10 years! Dr J in DC, Dr C in Tampa (now retired) pulsed IVs 13 pic lines then port forever (removed 2.5 years ago. I hate to say...
Hey Girlie- hope u r doing well. I have been off the grid for a few years now- back stronger than ever! I too had the early symptoms and DX was “addrenal gland deficiency, pitituary gland deficiency....
Hey Joe! I go way back! I too had IGnex labs (we know now that the 2 tests don’t test 4 LD only the Immune response,) How do you treat the Bacteria if you don’t test 4 it! No wonder we weren’t CDC...
I have a long story first private policy then SSDI based on Lyme Disease. I think I was the first to get it based on Lyme (in FL) maybe the south. I'd be happy to speak with you. Jackie...
I am in Tampa too. Would like to talk with you...
I did watch last night. We have all been there. She made such a tremendous effort to attend and her so called friends commented about her appearance. The show should be renamed RHBH-Real Housewives...
DaveNJ41 this forum has been the most helpful not going 2 lie, my marriage has suffered but there's more good than bad after 24 years. The above advice is so good I can't add anything. Except to get...
30 days oral doxy repeat then antiparisite (flagyl) my husband just did this after removing 2 ticks good luck wish i could have done!...
got us good-we can dream. I'm dying brain fog pain would welcome going 2 sleep not waking up. 7 years has taken its toll....
Piroutte, I too have been MIA (too sick to read,type etc) so it is good to see have everone's doing. I too got a port over 1 year ago (need to update my profile) after dealing with the infected picc...
Ive got em' too! I call them diabetic feet cause thats what they look like....
thererese55- I too was treated by retired doc. I'd love to talk over the phone about LLMDs in Central FL -maybe e-mail your # so we won't break any forum rules.... Landside 55 Unless changes in forum...
Ade, This was Dr Stephen Fryes discovery (he is In az) In fact, it has recently been renamed look it up on internet. It's a Protozoa rheumotoliga sp? Main symptoms are severe fatigue and severe joint...
Oops the dosage is for potassium glutinate. Good Luck...
2 tablets (1000) Mg at first sign, then 1tablet every hr as needed. I get this from Dr J in DC (LLMD.). I've had them in fact all day for the last several days although I am on abx and anti...
Thanks for the gentle reminders. More importantly,thanks to you all for support,valuable information and just a sympathetic ear. This site has been the most helpful in this isolating medical journey....
Dr. J in DC uses something like BBC (borrelia burgdorferi complex). I think this helps in many ways. Insurance doesn't get the 4 lettered "L" word so claims are paid a little easier. The other...
I can't believe I shared this! Your comments are two funny! Free Bassett Hound to good home....
In addition to a port and a cast, I can barely get around. This morning I was finally able to get a lab sample (poop) that my doctor had ordered months ago. Before my home health nurse arrived, I...
I am so sorry you are going through this. I experienced all of your symptoms and too thought I was having a breakdown. The good news is that it sounds like die off symptoms and should improve with...
Traveler, So sad to hear you are stepping down as OUR moderator. I realize you have given it much thought - however many of us expect you to pop in occasionally if you can. I want to personally thank...
Thanks guys for the input.Traveler-I'll send pics to your email unbelievable! Jackie...
Wryter, I am so sorry for the losses - so. Much to deal with at once . I agree with the advice of our "Lyme family". I had two deaths in i1 week -a five year old girl on Monday and then a very close...
Does anyone else have this? The lesions appeared about year 3 of my Lyme Dx I have been on I'V abx since. The abx helps but as soon as I go off the Ivs it reappears . My LLMD thinks it is a...
Wow! I just learned a great deal of information from your post and the replies. I have had shingles 3x. My pain Doc said this was impossible since you can only get them 1x . Even though he saw the...
Bl (before Lyme) I worked in the blindness/visually impaired field. Long story short I had an idea about my headaches. I don't want to scare you (too late right) but my symptoms sound similar....
I have noticed my spit (mornings are the largest in quanity) is long and striggy. If I look close, it appears to have the same pattern as my leasions which are all over my body. The stands are thick...
Lymer, We must talk in person. I have it too. I usually cough up a hairball full 1st thing in the am. Sometimes blood tinged (TB neg). If you look carefully, they look like a srting of 8 folded in...
Samantha, Thanks for the suggestions and overall good advice. I will check into the doxy and I do use the aloe (I have a plant right outside my bedroom door!) I forget to use but will make an effort....
Traveler, I have 3 docs dx Morgellons. Hillarious for a disease that dosen't exist! (A distant relative of Lyme no doubt!) However, the Morgellons symptoms peaked about 18 months ago, was treated by...
Thanks! I'll e-mail you....
Marie do you have ? Co-infections I believe have done this to me. I doubbled my weight and do not eat ( I've had a baked potato in 3 days). I have no appatite. I also have stomach issues (gallbladder...
I apologize if this has been discussed recently. I am in Tampa. I do see Dr J in Washington DC but am too sick to travel to see him. waiting in FL...
Shabbychic funny you do feel like doing that. Afer beening jerked around by my PCP, i had a cup of fluid filled with funky stuff and asked her to lool at it . she stated that "bla bla bla...
How many have severe skin leasions? Mine are on the entire body (about 150) and vary in shape and size. I think my comprimized Immune system complicates the healing process. They vary in shape and...
Sorry for the late response. I have in bed for 1 month in pain, fatigue, etc. I was dx by a friend (rhumatologist) at 9 months via Western Blot. Six months later my LLMD dx more detailed infections...
Me too! I thought it was something to do with all my medical issues! The die-off makes sense as I am currently on IV therapy (2X day Vancomycin). I also have unbelieveable skin leasions and a variety...
This sounds familiar. My EBV levels were 20 times the normal range. I would like to have them repeated as they haven't been checked in 4 1/2 years. I too have neuro Lyme and related symptoms. I have...
+Lyme, So sorry you too are suffering with this. E-mail me with your phone # -I'll share my story-Treatment etc. Waiting in Fl ...
Thanks guys for the replys and suggestions. I will check them out. Jackie ...
I have been on the Lyme site for quite a while but have a secondary DX of CFS. This is my first post on the CFS site. At this time the Lyme is somewhat "managable" but the CFS is unreal! My pain doc...
After the usual drawn out ordeal with Social Security, I finally got approved! The best news is that I felt "pushed" to have the eligibility approval based on mental health issues but refused. I know...
about a year ago, I got a rash on my forehead. It is a raised circular rash about the diameter of a dime with a redish boarder and small white puslike, granular insides (nice huh!). At first I...
I experience all of the symptoms listed already (I think I have lots of severe residual effects from neurolyme). It is a vicious cycle IVabx (feel good/semi-normal) then slowly feel like s*** after...
Tampa, Florida...