posted
Hi everyone, I would appreciate any help that any of you can provide.
I am a long time member of this site but don't often post. I was bitten in the fall of 2002 and life has been completely ruined since then.
I don't want that to happen to a life long friend who is like a brother to me.
He lives in Gainesville, Florida, and went camping in N. Florida last weekend. On Tuesday he had to dig a tick out of his elbow area on his arm.
He just called me today very worried as a bulls eye rash has appeared around the tick bite and has been there for a few days. He says that he has had flu like symptoms with fever for the last two days also and his whole body hurts
He describes how he feels as awful. He knows my story with Lyme and is very concerned. Tick bite with rash with flu like symptoms and whole body hurting is exactly how my illness started.
He lives close to Shands Hospital in Gainesville, but I suspect that they are no better than any of the other big name hospitals when it comes to Lyme.
Can anyone give a doctor referral, or any other advice on what to do immediately for this situation? Also, any recommendations for any natural products to start taking immediately would be appreciated.
Thanks in advance.
Jeff
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
I've told him to take several pictures of the rash. He also saved the tick he dug out of his arm. He said that it was very small.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
He sent me a picture of his rash, is there a way to post it on here? It is saved on my computer.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Have you tried copying it and pasting it? Dunno if that works, but it's worth a try
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Tell him to go to the ER or to a doctor and at least get started on doxycycline. He can show them the picture of the rash and the tick.
Don't let him wait another day.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8885 | From Illinois | Registered: Aug 2004
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posted
If he can get on doxycycline, he doesn't have to develop Lyme. The same thing happened to someone I know, they were put on doxy for a month and now, several years later, they don't have Lyme.
He needs to go to his GP or to Urgent Care ASAP.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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posted
Thanks to everyone for the responses. He is going to his GP first thing this morning, and if he doesn't get any help there, he is going to the ER.
Hopefully he will be put on Doxy immediately, and then we can go from there in trying to find a Lyme friendly doctor.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
Well, he was able to get in to see a doctor art the clinic he usually goes to.
They gave him the usual stuff about there not being any Lyme in Florida, but he still had the bulls eye rash on his elbow and when they looked up Lyme rashes on the internet they admitted that it looked like a Lyme rash.
He also had the tick in a bag. With all of that they gave him a two week prescription for Doxy, 100 mg two times a day.
They told him if he did not feel better he could call back at the end of the two weeks and they would refill the prescription, which I told him to absolutely do no matter what.
I'm trying to find a Lyme friendly doctor close to Gainesville for him to go see as soon as possible, as I am worried thart the 100mg dosage is too small. He only weighs 130 lbs, though.
I am very worried for my friend, when he told me everything that happened today, he asked me if I had ever had difficulty or trouble thinking, and said that at work this morning before going to the doctor he was having 'brain fog' (his words, not mine), and his neck felt like it was on fire.
Not good, I know.
Does anyone have any thoughts on anything more to be done presently? How about telling him to double up on the dose, 200 mg twice a day?
Thanks in advance again.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
My friend David has run out of the two week supply of Doxy that his local doctor gave him and they are refusing to give him any more.
He is in pretty bad shape and hasn't been able to go into his job for over a week. Symptoms include pain all over his body, stiff neck, dizziness, brain fog, very dark urine, muscle twitching, and overwhelming fatigue.
I have advised him for several days now to go into the ER at Shands Hospital in Gainesville, and hope that his symptoms plus his pictures of his bulls-eye rash and the actual tick he removed will be enough to maybe get him admitted or at least a prescription for a stronger antibiotic.
He is incredibly depressed and says he cannot believe he could go from perfectly healthy to not being able to do anything from just a tick bite a few weeks ago.
He is thinking about having the tick tested, can anyone offer any recommendations for a good lab that does this, and the procedure for fetting it done? Does the request have to come from a physician, or can anyone send in a tick to be tested?
Thanks in advance for any help, my friend is in a world of trouble as so many of you can relate to.
Jeff
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is a way back to health. Be sure to remind him of that - and even with this enormous hiccup, he will still be addressing it months / years sooner than most who have found out the hard way the realities of lyme / TBD.
Contact the state group for doctor recommendations. He may have to pay out of pocket (most likely).
AVOID STEROIDS and "autoimmune suppressors" such as biologics, etc. Avoid aerobic exercise, too.
Keep those photos safe and in separate files in case one might be deleted by mistake.
" . . . they gave him a two week prescription for Doxy, 100 mg two times a day. . . . " (end quote)
Far too low of a dose, and not enough coverage with the right classifications of Rx.
Sadly, doxycycline - or any antibiotic alone, can put lyme into the chronic state as they do not touch the cystic form of lyme that antibiotics alone create. A different kind of Rx that is not antibiotic is required. It must be combination treatment, never just one Rx.
Yet, even two weeks of a proper combination treatment would not have been enough. No regular doctor would do a combination approach, though, as they are ignorant of the other forms Bb takes or what is required to address it all.
Most doctors are not ALLOWED by their bosses / their medical boards to do more than they have done. It's wrong but in many states, this is the way it is and to just hope some doctor will help can be wasted time.
MOST DOCTORS KNOW NOTHING ABOUT LYME, or the COINFECTIONS. What they don't know about, they cannot address. And then the politics handcuff them, too.
At this point, while "chronic" lyme seems obvious, at "chronic" has such negative effects in the medical world, perhaps better terms if one might find a lyme "friendly" doctor for the moment would be
tertiary neuroborreliosis - or disseminated neuroborreliosis
I'm so sorry to hear this.
Yes, this is somber news and let him know it's natural to be depressed about this and treatment access is going to shock him right now but there are ways he can hold on and work through this.
He does not need to test the tick. He does not need a lyme test for himself. His BODY has been the test result.
Testing of the tick - if it's been kept in a good way - might be of help but it's NEVER going to prove to any regular IDSA doctor that he has lyme. They just will not accept that.
The IDSA has just started a major "campaign" to stomp out the very idea of "chronic lyme" or extended treatment. And it's a major anti-lyme campaign - to turn patients away even more forcefully than before.
Testing of the tick - should NOT be done by "typical" methods. Not all labs will do it right, even then, it's not the best method.
He has lyme, no doubt about that.
They will say what he got for Rx was enough - no matter what.
CALL THE STATE LYME group - IF they are ILADS "minded" to see the options for doctors.
He needs to get into an ILADS educated LLMD or LL ND for assessment - beyond the obvious lyme - and also to include possible other tick-borne infections.
It may be that regular doctors might test for BABESIA or ERHLICHIA or other common TBD (tick borne disease), though, and he might be able to get some treatment through them for those . . . but - still - it would not be the most correct for the long run, only a stop gap.
Doctors who are "guided" by the IDSA will ignore lyme - and won't know how to properly treat other TBD beyond maybe a stop gap.
In the meantime, access to an ILADS LLMD or LL ND may not be possible. If so, though, tell them up front of the urgency.
And, even today, I advise getting started on some top grade ALLICIN capsules &/or some of the herbs BUHNER recommends. However, if he is taking any Rx for other reasons, be sure to consider possible interactions.
If he knows anyone with a RIFE MACHINE, that might be the best bet until he could see a LL doctor. Still, LIVER SUPORT MUST BE ON BOARD. MUST, no matter what approach is taken. -
[ 10-12-2016, 04:09 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Similar issues with tick tests, too. If the lab is inferior, the results will be too, yet, a tick could test negative even with the best method and it could still be present.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
ILADS - International Lyme & Tick Borne Diseases Society
About: Through Education, Awareness, and Action, ILADS promotes understanding of Lyme and its associated diseases and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.
The Lyme Disease Association (LDA), an organization which expanded its focus nationally 17 years ago, is dedicated to Lyme disease education, prevention, research funding, and patient support. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- PROBIOTICS & LIVER SUPPORT are key to have on board now to help his body function.
How to find an ILADS educated LL professional in complementary fields (naturopathic, acupuncture, etc.)
ARTICLE & BOOK LINKS by various kinds of LL authors - - and information about herbal and nutritional supplements -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Involves FLORIDA -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also key to know - though hard to see - is the IDSA's new all out war against patients with chronic lyme.
Note the headline on each segment. Such as "How doctors should 'manage' those who think there is such a thing as chronic lyme.
Tincup posted these this week. Note: they are all WRONG, so very wrong. They will not allow for dissenting comments, either.
We need to see these in case our relatives / friends do and wonder what is going on . . . and also to know this is the kind of very bad "education" that doctors are fed.
We need to avoid such doctors in the first place yet be prepared if we still meet up with someone who says such garbage. Fighting may do no good [as far as convincing them to prescribe Rx]
but be prepared to walk tall in the real knowledge and walk out the door. Have a simple sentence or two if you want to voice an opinion, though, too, as you just leave. Of course, they get paid for the appointment and can red flag your chart so there is a lot to be said for not even going to a doctor who is not equipped.
posted
If everyone is refusing to give him doxy, which is a simple thing to do at this point, then I suggest you get Lyme-literate doctor referrals ASAP for immediate triage - the usual is 200mg doxy twice a day.
You can post in Seeking a Doctor, post in your state chatsite, or check Florida support groups at the upper left here - click on United States, Florida.
Sending you a PM -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thanks Keebler and Robin for your information.
I am trying to help him find a LLMD to go see, but he is a little resistant to the idea of it. He keeps saying, "we have doctors here in Gainesville, Shands Hospital is one of the best in the state, those doctors will know about Lyme disease".
When I try to explain to him about the hostility from the mainstream medical community to everything Lyme Disease, he just doesn't seem to understand.
I am going to try to find some allicin capsules for him to take, if anyone has any recommendations that would be great.
One of his symptoms is dark urine, which I had when I became sick, and my LLMD said it was a symptom of Babesia, and after taking malarone for three months my urine color became normal again.
With the possibility of him being infected with Babesia, are there any natural products at all that can possibly treat it?
Thanks again for any help.
Jeff
(breaking up a paragraph for easier reading for many here)
posted
I already sent you a PM with info for a LLMD in FL who is over an hour away from your friend.
Hospitals are not good places to be treated for Lyme - I would steer clear of them. Many Lyme patients on Lymenet have horror stories to share about their experiences.
Here are some comments:
"I don't know of ANY hospitals that know ANYTHING about Lyme."
"I don't know of ANY hospitals or high profile clinics or any infectious disease doctors who understand Lyme and will treat it effectively."
"There are no Lyme doctors at major hospitals. They will not diagnose you there. And even if by some miracle they DID, they would not treat you past 2-4 wks."
"Lyme will get you run out of hospitals faster than you can believe."
"Most hospitals do not recognize chronic Lyme and do not know how to treat it."
posted
Jeff, explain to him that this is not the usual situation.
You can tell him so many of us went through this - trusting regular doctors to know what to do. I certainly did, and I had surgeries, too.
Tell him this REQUIRES a LYME doctor or he'll probably be sick the rest of his life!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Hopingandpraying, thank you very much for the information you have sent. I have been trying to get him to go to the Dr. you recommended, but as I said, he still does not understand what he is facing with Lyme and coinfections, nor does he understand what he is up against when it comes to the mainstream medical community.
I called him again at lunch and told him in no uncertain terms that he is dealing with the rest of his life with this illness, and not to put his head in the sand and thinking that just a few more days of rest will make him better.
He has never had to face illness before, is an active athlete, and he thinks he will just recover his health and this will pass.
I appreciate the help from everyone,because of my own ruined life and experiences I know his future health hangs in the balance, and I am going to try to keep doing what I can to get him to take the appropriate steps and get to a LLMD.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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Don't stop trying to get him to seek help, but he is an adult and you can only do so much. If he continues keeping his head in the sand, it's only going to get worse as we all know!
I just don't want anyone to go through what our son has gone through. It took SIX YEARS just to find out what was wrong with him and he has been ill for sixteen now! His life as well as ours have been ruined and so many things have been lost because of this terrible disease!
Keep trying to get your friend to view "Under Our Skin" and get to that LLMD!
Posts: 8981 | From Illinois | Registered: May 2006
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posted
I guess you could also let him know that this has happened to many very fit athletes, and it has taken them down, hard. I have spoken to many long-distance runners this happened to. They all said they wished they had known. Many can no longer run.
Perhaps to get a list of athletes this has happened to and let him look at the list - I know there are some famous tennis players too who got Lymed.
Another way to approach it is to simply say what it does in the body and if not stopped, it's called sayonara (goodbye in Japanese...) to your healthy life.
Like it gets into the brain, spinal cord and nerves and inflames them. Like it throws off the HPA axis - hypothalamus-pituitary-adrenal axis - and there goes the hormonal cycles of the body, including ability to sleep! Like it can get into tissues everywhere and inflame them.
I guess it's important to hear how he is thinking so you can respond to his thoughts.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
My friend has been sick ever since the tick bite and says 'crazy' things are happening to his body (muscle twitching, pain, brain fog, extreme fatigue, etc.), so I have finally been able to convince him to go see another Doctor.
He didn't want to go to Jacksonville, but there was a Doctor listed in Gainesville on the list that Lymetoo had sent me for Florida Doctors that I had missed the first time looking at it.
She wasn't listed as a LLMD, but as a Doctor trying to help.
They ran a blood test on him and called him yesterday to tell him that he had tested positive, and started him on Doxy with a two month supply.
They also said he may need further treatment even after two months, which was encouraging.
I had been a little discouraged initially when they did not start treatment based on his symptoms and picture of his rash, and I'm not sure what they would have done if he had not tested positive.
He is a little over two months into this, so I hope he is not too late with getting treatment started.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
I also do not know if he truly tested positive, or if his Doctor looked at the results herself and said that it was positive even though it may have come back as 'negative' from the lab.
It's not easy to get a positive test from one of the mainstream testing labs. I'm assuming it was a standard Western Blot test.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
Can you imagine how many slip through the cracks because they never had the benefit of the rash!?
I'm so happy he found a doctor who was willing to go the extra mile!
Be sure to warn him about the doxy .. (how to take it) and about probiotics .. and how to take them.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
If you go to this site you'll find a Doctor Referral section on the menu to your left. Once on that page you'll see a link to find a Lyme treating doctor. I know you have one now, but for future reference.
You will also see, under the lifeguard stand- a link that says...
There IS Lyme Disease in Florida!
Click there and scroll down to see the TBD's in Florida. You'll also see various strains of Lyme disease listed that have been discovered in Florida that are not picked up on the tests.
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
You could tell him to go to another urgent care clinic, and not mention that he's already been to one, to get another script for doxy. Hopefully they would give him another couple of weeks of meds which he could tack onto the first course, buying more time until he can get into an LLMD.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I would give your friend a copy of "Cure Unknown" by Weintraub. It fully explains the path of lyme. You know the whole story, he doesn't. This book explains it wonderfully.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
You can get doxy from internet pharmacies. A friend has gotten it from livestock catalogs.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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