posted
Hi, I am new here and have been reading over this-http://www.lymediseaseresource.com/BurrGuide2008.pdf
And I got to the bolded part about immunosuppressants and am now in desperate mode as I am on immunosuppressants as I have had a kidney transplant back in '06. I would like to know of a doctor in my area south west RI or south east CT or anywhere around here, I will travel!!
After I post this I am going to call the clinic and see if they have any results back from the test. And then make a call to my transplant office.
I am so shocked that I have not heard anythig about lyme from the transplant clinic as you would think that it would be a something to be concernecd about as this is deer tick/lyme country!
I mean, I was made very aware of the risks of skin cancer and what precautions I needed to take to avoid and prevent it, why not ticks and lyme??
I can't believe this, my head is spinning from all this... literally!
Posts: 8 | From Rhode Island | Registered: Jun 2009
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posted
I just posted about the apt. I canceled with Dr. C. south of Philly. If you email me I can send you her bio and aritcles she has written. The apt. would be wed. morning 9am.
-------------------- Mom & two daughters with lymes since 11/08 Posts: 12 | From South Jersey | Registered: Nov 2008
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posted
Ack! Pennsylvania? Wednesday? Oh, please tell me there are good lyme doctors closer to me than that??
I do appreciate your telling me but I don't think I could swing that one, not on such short notice anyway. Philly is at least a 3 hours drive from where I live.
I suppose I should be a bit more specific on my 'I will tavel' comment. I don't want to travel that far unless I have to. Thank you very much though.
Posts: 8 | From Rhode Island | Registered: Jun 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
I'm wondering if you are having symptoms of Lyme?? If not, calm down, right now you are OK.
If you are having symptoms....if I were you I would take the open Dr. C appointment! If it's the one I'm thinking of, she is one of the very best in the US.
Did you know that to get into a good Lyme Doctor, it can take about 6 months???
If you are having symptoms, I would be packing my bags for Philly. Esp because you are on immunosuppressives (with very good reason obviously!). I have no idea what the plan of action would be, but I think you need a very very very good LLMD. Not that all of us don't, you just have much more going on due to the kidney transplant.
If you aren't having symptoms, then, just relax for a minute and start reading what you can find about Lyme Disease. There are a lot of good resources on this website.
So sorry that you are here on LN, but glad that you have found us!
posted
I had no idea! I really have no idea about any of this. I really am sorry if I seem panicky but this is all so shocking to me.
It seems the more I read the brighter the light shines and i see things clearer which is a good thing but I think I may be blinded by all this light!
Okay... deep breath...deep breath
So, I am not trying to be ignorant, lately it seems I have been running on the edge of ignorance, but I thought there would be more doctors and one closer to where I live? Yes?
And even to see her or any lyme specialist would I have to have a refferal?
I have not even gotten my results back yet. I don't know why it is taking so long? I had it taken on Friday.
Reality sinking in hurts. Lyme sinking in is worse...
This may sound crazy, but what the hey, that is where I am at anyway, but I really do need to get a positive test result.
I need to have the proof in my hand, in writing, not because I need to be convinced of what is happening or that I have lyme the light has shined down that dark tunnel but as I have a sceptic non-supportive husband (and a sceptic non-supportive doctor) that I will have to convince before I can go that far.
I supose that is why I was so surprised by the Philly doctor suggestion(but please know, I really am so grateful for the offer really! And sorry if i seemed snippy in my response too. And who knows I may end up there anywya?) I was hoping there would be one closer. And I hope even more that something is being done about it not just for my sake but all of us!
If my test does not come back positive, I don't know what I will do. I don't know. Hopefully I will hear something tomorrow.
Thank you all for your help,
Tokeeo
[ 06-16-2009, 05:33 PM: Message edited by: tokeeo ]
Posts: 8 | From Rhode Island | Registered: Jun 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Angie,
OK, so you are in the process of being tested for Lyme. I am willing to bet you were given an Elisa test for Lyme. That test happens to miss 40% or more of Lyme cases. So even if your test is neg, it doesn't mean much.
If you are seeing a regular doctor (which are called ducks around Lyme.net) they probably do not know anything about Lyme. they will say that you do not have Lyme based on your lab result and you will be on your way.
can you describe what types of symptoms you are experiencing? Have you ever seen a rash from a tick bite (bullseye looking rash)?
Don't worry, you didn't seem snippy at all! I hope I didn't either, just didn't want you to worry yet if you weren't having symptoms. I know how hard it is not knowing though either.
If you are indeed having Lyme related symptoms and the Lyme test is neg, I think it would be wise to find a Lyme Literate physican to assess you.
Good luck, so sorry you are dealing with all of this!!!
i too WOULD call & take that opening that 1 of our members canceled IF it's NOT already taken!!
normally shortest time is 2 weeks up to 6-8 MONTHS!! -----------------------------------------------------------------------
go to top of MEDICAL and read lymetoo's SYMPTOMS LIST; read them over and then PRINT off the lists where you have many symptoms to take to whatever llmd, lyme literate md, you end up going to.
glad you will call your transplant surgeon also!
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
posted
You know what is funny is that the clinic doctor was very aware of lyme and the tests. He explained the best he could in laymans terms how the test works.
He said it tested for antibodies and not the actual lyme bacteria and I may not test positive but I would still have lyme it is just that my body hasn't produced antibodies yet.
He also said the symptoms that I am having now may have been from the ticks I was bitten by a year ago even.
And regardless of the results to still take the 6 weeks of doxy. He said from the symptoms I am having that I do have lyme.
But my husband and my pcp would be in the duck catergory of poo-pooers. (is duck an acronym or just a term of endearment?)
I did get a rash around the bite but it was not a bullseye (I have pictures that I can show you) And I now have a scar where the tick bit me, so am assuming that it was on me long enough to have transmitted lyme.
I am having symptoms now and have actually been having symptoms for the past year but are they symptoms?
I myself, tend to be a naysayer and have become very good at explaining my things away especially because they are so non specific and also because I did not know what the symptoms were (thanks again Lymetoo for posting the list!)
And I have tried to tell my doctor and he saw nothing wrong and didn't believe me. So I had better have something very specific or evidence of it before I take it before the judge... er, I mean doctor.
And as far a symptoms go, and maybe you can relate to this also, I have a hard time deciding if a symptom is just a normal aging process, or not, especially as a woman, I am 45 and menopause must be knocking on my door sometime soon, eh?
I have been having joint swelling and pain tingling numbness in hands and feet, I skipped a period a few months back (I thought menopause until I saw it on the list). My heart pounds, I get dizzy, I feel like I am in a bubble. I over react to sudden noise.
In three weeks I lost 8 lbs, I have short term memory problems, I am almost at the place where I am afraid to drive as I had an episode at a busy intersectoin where I wasn't sure what to do... I like being sure of what I am doing when I am driving, it is much safer for everyone involved.
I can be freezing but my pits will be sweaty (is that a symptom?) I don't have headaches like a normal headache but my brain feels like it is fitting more snuggly into my head especialy around my forehead and eyes and I will get an occasional sharp pain in my head that fades away.
In the past 18 months I have had shingles, tendonitis and TMJ disorder, I have nerve damage and pain in my lower left quadrant (hip, foot and most recently my knee) I have joint problems and pain in my upper right quadrant (jaw, shoulder, elbow, and hand).
Having both the left and right side affected makes sleeping fun.
I also have miscelaneous joints fingers and toes that bother me. I used to love to go barefoot now it feels like I m walking on pebbles if i do.
I know that I have two (non medical) problems, one is not being able to communicate when speaking face to face (writing is so much easier for me).
I am not a forceful person and tend to loose any train of thought that i have especially with someone in authority (i.e. doctors)
And the other is I tend not to complain and would rather not talk about me and my problems.
I have recently thought to compare myself to the knight in the movie Holy Grail, where he has had both legs and arms cut off and he is still trying to fight and he says "merely a flesh wound" That's just like me. I can be limping around looking like death warmed over and be saying "I am fine"... "merely a flesh wound"
And combine that with my husband who could see me limping and looking like death warmed over and want me out building fences (that was just yesterday.
Anyway, I don't know where I am heading with all this, but need to get going... the animals are waiting to be fed and let out.
If I hear anything i will post it somewhere... should I start anew post or just add it here?
This forum stuff is so new to me. I have a facebook page but this is different.
[ 06-16-2009, 05:35 PM: Message edited by: tokeeo ]
Posts: 8 | From Rhode Island | Registered: Jun 2009
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posted
Angie, This Doctor will more than likely, after the 6 weeks, declare you cured. You need longer treatment than 6 weeks.
You said: And I have tried to tell my doctor and he saw nothing wrong and didn't believe me. So I had better have something very specific or evidence of it before I take it before the judge... er, I mean doctor.
Lyme Literate Medical Doctors (LLMDs) will usually treat clinically, which means by your symptomology until you are symptom free, with or without positive tests. (because the testing for LD is inconsistent)
There in lies the need for an LLMD.
I had two tick bites and never had a rash with either one. It can be an indication of the disease, but you don't necessarily get a rash.
You said: This is scaring the crap out of me.
That's a healthy reaction. I hope you get an appointment soon.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Tokeeo,
You said you had your lyme test "taken on Friday." Oh. Do you know which lab they sent it to?
Usually, lyme tests are done early in the week but, maybe the lab yours is going to works on the weekend. It's not good for it to sit for days.
What tests? ELISA is a worthless test and most labs don't test all the necessary bands on the Western Blot. False negatives are common.
And, remember, tests can tell you everything. It's best to see an expert doctor (an ILADS LLMD) if you think you may have lyme.
When you make the appointment, be sure to tell them about your kidney. That way they can put their brain in gear about specifics that would be important in your case.
From what you describe and the rash right after a tick bite (which does not have to be a bulls eye, by the way). Most patients never have any rash, but there are different appearances for those who do. It's just that the bulls eye is always lyme, from sure.
forgot to mention, the post above 3-4 above mine was a long MEDICAL one with problems/symptoms galore,
please copy that one and ALL REPLIES after and start a NEW POST IN MEDICAL forum.
subject: newbie, ask a medical question specifically ok!
paste your above post there, go to bottom left hand corner and mark box to receive all replies. you'll get many more replies than in the DR. forum ok.
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