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My 9 yr old son has lyme :(

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My 9 yr old son has lyme :(  
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worriedinvt
Regular Member
Joined : Aug 2011
Posts : 120
Posted 10/7/2012 6:27 PM (GMT -7)
Hi all,

Its been a long time since I last wrote. Life has been busy and I needed some time off from focusing on this illness.

As a recap, I was infected with Lyme in March of 2011. Diagnosed in August 2011 and treated w/ abx until this past February or so. During that time, my stepfather had a severe stroke and so my time had been focused on that for quite a while (he went home in May, had a mini-stroke and seizure on his 6 mo stroke anniversary, came back home and is slowly recovering; he is now able to walk with minimal assistance yet still has no use of his left arm). I was feeling pretty well for much of the summer but the leg aches and such have been slowly returning (I think it might be bartonella bc I have the burning skin, tender feet, and I had the track mark type rash early on in my illness).

In May 2012, at my stepfather's homecoming celebration, my son picked up a tick. He went for a walk in the woods with a few other kids and was out maybe a half hour or so. When he returned, being the paranoid-of-ticks mom that I am now, I checked him immediately and one had already attached to his back! We guesstimate a max time of 20 minutes or so of attachment (I removed it pretty easily with tweezers). I called the pedi right away and asked for prophylactic treatment which she denied.

I had the tick tested and it was positive for Borrellia. Prior to the results coming in, he had stool changes and a low grade temp in the 99s. These were also my first symptoms. I called his dr. once I had the results and she saw us. She was not concerned bc of the very short attachment time. I basically pleaded with her, told her my story, and my concerns. She agreed to 10 days of doxy which I knew wouldn't be enough if he had it but also knew it wouldn't be good to give to him longer if he didn't have it.

So we took the meds and time passed. He had the occasional complaint, like blurry vision, double vision, leg and bone pains, and later--involuntary movement of his foot. He had a spacing out episode as well. All of these things came and went quickly and were very spaced out. Had I not gone through this myself, I probably wouldn't have even noticed. He wasn't sick-sick.

At one point, he had two canker sores in his mouth with red dots. I called the pedi and asked about it during which time I also mentioned the prior neurologic symptoms. They wanted to see him bc of the lyme-like symptoms but when we saw them the say "nothing" , not even in his mouth (which I didn't understand bc I could see yellowing in his mouth and such). While there, I begged them to authorize a blood test through Igenex which they granted though again they thought it very unlikely.

I did some research on LLMD's for peds in our area and spoke to a wonderful naturopath. I explained his random symptoms in a child that is otherwise very healthy and she thought it sounded like a possible lyme case. (During our long wait for the results, he had ringing in his ears that came and went.)

We finally saw her, three hours from us, yesterday (yes, a Saturday--how kind is that?) She was so kind and wonderful. She had his results. Not a CDC positive, but a positive via Igenex standards for an active infection via western blot. With his symptoms and the positive, she believes he has it. She also believes he has yeast from the prior abx.

So the plan is to heal his gut first with reducing sugars, reducing chemicals, and increasing probiotics. Then we are adding antimicrobial supplements/herbs and looking for a herx. Once he reaches a herx (we increase the number of drops each day until he has one), we stay at that amount until it stops and then increase again. She gave me stuff to ease the herx and increase immune function. Later, we can try abx but I think she wants to try to keep his body healthy and knock down the bug before getting so aggressive.

I don't know if it will work but I can tell you that I was on abx for something like 9 months and I believe I still have either lyme or a co-infection. I'm still dealing with the yeast from it.

Please pray for my baby. I want him to heal quickly--which is why I couldn't let this go and wait for the symptoms to be "obvious"!
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happytimes
New Member
Joined : Oct 2012
Posts : 18
Posted 10/8/2012 7:11 AM (GMT -7)
 

 Worriedinvt your son is lucky to have a mom that knows so much. I am new to lyme and this forum but have very quickly educated myself on lyme and co-infections. So many families seem to have more than one member with disease.

My 15 yo went to so many specialists until I finally started to listen to stories of people who know people who had similar symptoms and exp. for years before going to another state for treatment. Sounds to me like young people heal better from lyme, your son is trully blessed to have a mom that caught the situation so quickly. Our Dr. in Pa. that is 4 hrs away is boosting my daughters immune system as well as treating with antibiotics. Hope you and your son find a good treatment that heals him quickly.  

 

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borderlyme
Veteran Member
Joined : Jul 2011
Posts : 1486
Posted 10/8/2012 7:24 AM (GMT -7)

I can only imagine how frustrating and upsetting this all is/has been for you! If it makes you feel any better, it sounds to me like your son is finally in good hands. It's always so much harder to see a child get sick. 

While this doctor is treating your son, are you having her take a look at your case as well? If you're still having symptoms and the abx approach isn't working for you, there's no reason you shouldn't be treating yourself as well!

I'll be praying for you and your son - be well!


Co-Moderator, Lyme Disease Forum
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wellbeautifulspirit
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Joined : Sep 2012
Posts : 671
Posted 10/8/2012 8:13 AM (GMT -7)
sending love and prayers.
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Justme4508
Veteran Member
Joined : Sep 2012
Posts : 674
Posted 10/8/2012 10:09 AM (GMT -7)
Love and prayers to your little guy, Its rough enough on the adults .
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worriedinvt
Regular Member
Joined : Aug 2011
Posts : 120
Posted 10/8/2012 6:17 PM (GMT -7)
Thanks all.

She has also advised us to reduce sugars and carbs as well as environmental toxins in order to boost his immune system....

I am thinking of asking her to treat me as well--since we could probably use a lot of the same remedies which would save me from buying oodles of things...the cabinet is getting very full!
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Traveler
Elite Member
Joined : May 2007
Posts : 36317
Posted 10/9/2012 9:55 AM (GMT -7)
I would second - or third or fourth - the suggestion to have this doc treat you as well!! It would encourage your son that you are trusting this doc as well!

I'm so glad that you were able to find this doc for your son and that she's got him started quickly on the right path!! Kudo's to you for being the ever-watchful Mom!!! You saved your son from possible issues down the line!

Healing thoughts and prayers to you and your son!
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List" for Lyme disease.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Questions about what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name
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worriedinvt
Regular Member
Joined : Aug 2011
Posts : 120
Posted 10/9/2012 3:10 PM (GMT -7)
Thanks, Traveler. I really feel like a lone-soldier! The pediatrician was of little help--at least I was able to convince her to give him a little bit of abx and to send out the Igenex lab--which I couldn't order without a doctor signing off. Honestly, had I not gone through it myself, I don't think I would have recognized the symptoms. Think of the number of children out there who are sick with this and their parents just don't have the experience to notice it??? And the pedi certainly isn't going to suggest it as a possibility.

Funny thing--they should have rcvd his results yet I haven't heard from them. His test was positive by Igenex standards--negative by CDC standards so I won't be shocked if she calls and says "he's fine."

Little does she know, I already have him under someone else's care.
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Traveler
Elite Member
Joined : May 2007
Posts : 36317
Posted 10/10/2012 8:59 AM (GMT -7)
Yes, it's terribly unfortunate that the children that are infected will suffer. That's what happened to me, I was the only one in my family that was infected and having enough symptoms to cause issues, so no doc was willing to look too far.

It will be sooo good when we finally get the doc's all on board just with learning the truth about these infections! The argument about how to cure them can rage on if we can only get these kids and adults diagnosed!

I'm sooo glad that you knew what to look for and how the testing is messed up and how to find good treatment for your son!!

Don't forget to schedule an appt for you as well!! smilewinkgrin
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List" for Lyme disease.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Questions about what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name
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lymemomma
New Member
Joined : Oct 2012
Posts : 7
Posted 10/10/2012 8:24 PM (GMT -7)
worriedinvt~ hang in there, you are not alone. I have a 7 year old son with was diagnosed with Bartonella, and Lyme finally in January.. I have been through hell and back with my son and understand your worries. We have found a LLMD in Concord NH but things are still slow in progress.
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California Cat
Regular Member
Joined : Feb 2013
Posts : 265
Posted 6/13/2013 8:17 AM (GMT 0)
Hi Worried, and LymeMomma,I'm just writing in because my son (8) also has Lyme. I'm learning he may have Bartonella too.

Worried- I am taking a page from your book - I've been trying to get results from the wrong doctors and I need to move on to the right thing.

LymeMomma - I found this thread via your name while looking up rage. I'd like to talk with you please. I'll send you an e-mail.

The whole thing with people not believing is especially damaging because not only do we waste time not getting treatment, but our kids get nasty labels which hurt their souls as well. Not to mention the aura of "crazy mom" which is exhausting to face.

If our kids had been in car accidents people would be so supportive. Thank you everyone on this site for stepping in where closer people havn't.
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springsjean
Forum Moderator
Joined : Mar 2009
Posts : 2169
Posted 6/13/2013 3:36 AM (GMT -7)
So so sorry to hear your son is sick. I also have chronic lyme and when I picked up my husband from the hospital for a breakdown also caused by lyme, my 12 year old son showed me a bullseye. I couldn't believe it. He had been complaining of not feeling well - headache, eye pain, fever, etc. but I thought he was just stressed from my husband being in the hospital. Anyway, we took him to a neurologist who was recommended to treat pediatric lyme as our LLMD would not take minors. He lit up almost every band on the regular western blot.

He treated him with antibiotics for four months. That was 2 years ago and he has been absolutely fine and growing like a weed since then. Children can fight so much better but the bacteria has to be pounded long and hard before it has a chance to get into the tissues and organs.

Insist on at least 4 months. All the best to you and your son. Keep us posted.
Lyme, HME, HGE, bartonella. 4+ years undiag. despite 10 drs.
Current meds: folbic, neurontin, cymbalta, plaq. and roxid Prior meds: bactrim, doryx, amantadine, amox, minocycline, tetracy. IV refused by ins. Supplements: boluoke, alpha lipoic acid, AG immune, magnesium, milk thistle, resistant microbes, cats claw
FEELING GREAT THESE DAYS! Hang in there - it does get better.
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California Cat
Regular Member
Joined : Feb 2013
Posts : 265
Posted 6/13/2013 9:02 AM (GMT -7)
Checking in so I can get notices of new postings. My son is getting worse and I have 2 more appts. next week. I count on all you wonderful people for sanity.

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Traveler
Elite Member
Joined : May 2007
Posts : 36317
Posted 6/13/2013 3:29 PM (GMT -7)
Cal cat,
How are you doing? What can we do for you? As you have said, there are many wonderful people here that would love to help in some way!

And if you are counting on us to help you keep your sanity, well, that may be problematic! LOL!! I think we are all a little crazy!! LOL!!
Lyme herbs used: "Chronic Tonic" from www.mistymeadows.org/wendydocs/Lyme Disease.pdf for 9 months

Bart herb - only Houttuynia for 6 months
tx ended 1-2013

Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV

Questions about what I've posted or just have questions? Please email me!!! Click on blue envelope under my screen name.
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California Cat
Regular Member
Joined : Feb 2013
Posts : 265
Posted 6/15/2013 11:04 PM (GMT -7)
I'm sifting through all the info I've been given/led to so I can really present a strong case to the eye doc who is at least aware that Lyme can mess with the eyes. 

 I just got my son's report card and he had a drastic decline in his reading comprehension. It has rattled my cage a lot. He tested VERY high at the begining of the year. Not so much now.

 His writing has gone down hill too. His math is still very strong. It fits but try to convince someone outside this Lyme community. AAAAACK!

Then, there's moods and random confusion, the pains, and I really think his arms are getting skinnier. Doctors don't seem to be very good for his well being.

I'm ok with us all being crazy together Traveler. I may need to box with the big Ash tree outside a while soon. It's very accomodating and I know it has worked for at least one pretty wonderful person. ;)

Thanks for the input everyone.

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Traveler
Elite Member
Joined : May 2007
Posts : 36317
Posted 6/16/2013 9:18 AM (GMT -7)
blush "I'm ok with us all being crazy together Traveler. I may need to box with the big Ash tree outside a while soon. It's very accomodating and I know it has worked for at least one pretty wonderful person. ;) blush

Golly gee, Cal Cat!! Thank you for your kind words!!

Yes, trees are very forgiving. Maybe it's because they would do that same thing if only they could move? turn LOL! Sorry, feeling a bit goofy today!

As for that eye doc, check out this article:
emedicine.medscape.com/article/1202521-overview#aw2aab6b5
Lyme herbs used: "Chronic Tonic" from www.mistymeadows.org/wendydocs/Lyme Disease.pdf for 9 months

Bart herb - only Houttuynia for 6 months
tx ended 1-2013

Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV

Questions about what I've posted or just have questions? Please email me!!! Click on blue envelope under my screen name.
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California Cat
Regular Member
Joined : Feb 2013
Posts : 265
Posted 6/17/2013 10:30 PM (GMT -7)

Traveler, thank you once again for your guidance. That site is going to take my medical dictionaries to translate, but that's ok.

I did follow a link within the link - a Lyme knowledge quiz and knew I had better expect a "no chronic Lyme" bias after the first couple q's. However, I got all the answers right as far as predicting what they would be claiming. Hmm.

Opthamologist on Wed. I'm edgy.

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Traveler
Elite Member
Joined : May 2007
Posts : 36317
Posted 6/18/2013 3:11 PM (GMT -7)
LOL! You wouldn't believe how often I have to look up things!!! Be sure to let us know how your appt goes! Go get 'em!! Giggle! devil
Lyme herbs used: "Chronic Tonic" from www.mistymeadows.org/wendydocs/Lyme Disease.pdf for 9 months

Bart herb - only Houttuynia for 6 months
tx ended 1-2013

Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV

Questions about what I've posted or just have questions? Please email me!!! Click on blue envelope under my screen name.
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Heathersdad
Veteran Member
Joined : Nov 2012
Posts : 1159
Posted 6/18/2013 10:05 PM (GMT -7)
worriedinvt,

I am so sorry to hear that both you and your son are having to deal with this illness. Your son is so fortunate to have you as his advocate! Please see to it that you receive appropriate treatment as well. Although your son has symptoms and has been sick for about a year, he is still in a good position to expect a good outcome.

My wife extracted an engorged tick from our daughter's armpit about a month before her 9th birthday. Unfortunately we didn't know anything about LD at the time. She became very ill. She went about 4 years before she was properly diagnosed and then treated. Her treatment seemed to take her to a place of remission, but then she relapsed a few months later. We switched treatment approaches and she has been well ever since.

Heather has just turned 18 and will be going to college next year on a swimming scholarship. I am telling you this so that you have hope.

You need to know that the healing process can take a long time. Please be patient. The journey is a learning experience for everyone. Most people discover that adjustments will need to be made in the treatment and supporting lifestyle. It comes with the territory, and do not be disillusioned when/if progress is nonexistent or slow at times. Just keep an open mind and learn as much as you can about treatment approaches as you can. That info may be valuable to you later on!

I wish you and your son the best!

Don
We are older parents and Heather is our only child. She became so sick and debilitated that we thought that she was going to die, and everything looked so hopeless and bleak. However, God answered our prayers, and used the healing hands of Dr. J. at the Hansa Center to more than restore the health of our precious daughter. I have a moral obligation to help others that are likewise suffering!
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California Cat
Regular Member
Joined : Feb 2013
Posts : 265
Posted 6/19/2013 11:53 AM (GMT -7)

Hi Heather's Dad,

Could you please share with me what things happened with Heather? I'm having to deal with the constant "Oh, that could be anything" answers that don't accept any significance for the erythema migrans rash that brought me to Lyme awareness in the first place.

The parents on this site who have described the symptoms and problems they caused have helped me know just what is going on when I get frustrated with his changes. I can remind myself to be patient.

Also, does anybody know other things that can cause a bullseye rash? He had small red centers, with rapidly expanding narrow rings around them. 5 different places on his body, one first, the others a day, 2, and, 3 days later. The rings spread to over 5" across.

Sounds pretty cut and dried to me but there is an unending chorus of "Oh, that could just be". The latest is that could be a wheat and dairy intollerance. I've seen plenty of recommendations that those foods be cut during Lyme treatment but I've never seen a bullseye rash attributed to the food.

So, along with "We don't have Lyme here" I propose "Oh, that could be (anything BUT Lyme)" be added to the list of phrases that make a person a candidate for a "Closed" tatoo on their forehead. Then we'll know we're dealing with a closed mind.

The Dr. a friend kindly sent us to yesterday is willing to order gluten and casein intollerance tests, but not a Lyme test until my son is free of these foods for 6 weeks. No recognition of the onset timing of his symptoms.

 His feeling is all the symptoms stem from the foods. I think the food intollerance, if there is one, is a symptom of the Lyme that wasn't a problem before the rash.

He says there's a better test than the IgG and IgM but I didn't get a name - just a specific lab in So. Cal that is not Igenex. I'll call back and ask for that name so I can share it in case it's true.

Today is the opthamologist and field of vision test. If my son can stop from looking around to find the lights we may get an accurate reading! Fingers are crossed. rolleyes

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Heathersdad
Veteran Member
Joined : Nov 2012
Posts : 1159
Posted 6/19/2013 4:16 PM (GMT -7)
California Cat,

Heather was a psychologically well adjusted and physically healthy child prior to her illness. Both aspects changed as a manifestation of the illness. She did not have the bullseye rash, and there was no obvious beginning point to her illness. I am reconstructing the course of symptomology from a retrospective glimpse back in time.

The first symptom was of a psychological nature during the early months. She started to experience anxiety and stomach pain at times of stress. These moments appeared at times such as the night before a school exam or in the hours before a swim meet. She usually vomited right before her first race.

Another of the early symptoms was that her ear lobes turned bright red and permanently stayed that color until she was cured. They felt "hot" to Heather.

After about a year, the anxieties became a lot worse. Her pediatrician suggested psychiatric help, as well as her swim coach. She also started to experience a generalized muscle soreness all over her body, and her joints started to ache. Her doctor said that she was just experiencing "growing pains."

The last couple of months before she totally crashed brought a rapid escalation of symptoms. She was very white and pale looking, and she fainted at a swim meet, collapsing at the feet of her coach, and was unconscious for a minute or two. This really in-shape 13 year old swimmer found it difficult to even be able to swim a 50 meter sprint by the time right before she totally crashed.

When she crashed she was totally debilitated both physically and mentally. We had a series of appointments with her pediatrician during which we pleaded for answers. He tested for EBV, and she had a very high titer, which meant that she had a bad case of Mononucleosis. He said that Heather was just very depressed over her circumstances, and that she needed several months of bed rest and a psychiatrist.

We got a second opinion with another pediatrician and got the same story. The useless Elisa Test was performed, but was negative.

I had done some research by this point, and i was positive that it was LD and coinfections. We eventually got hooked up with an LLMD. Her symptoms escalated to the point where she could not walk, had excruciating pain throughout her body, sound sensitivity, severe cognitive issues, spinal pain, bad headaches, right arm that was hypersensitive and extremely weak, severe gall bladder pain, stomach pain, extreme fatigue, dizziness, cracked and bleeding skin on the soles of her feet, deleriums and drenching sweats at night, and I could go on and on!

Dr. J's testing revealed that she had Borrelia, Babesia, Bartonella, Ehrlichia, Mycoplasma, HHV6, and West Nile Virus. She also had a very bad case of parasites that we had herbally treated before we had taken her to Dr. J's clinic.

We had gone through 2 IDSA MD's and 2 ILADS LLMD's before we found the treatment approach that totally worked for her. The experience journey is unique to each person. Heather required an approach that was completely different than conventional and even most alternative approaches.

I hope that this info helps you. I know that you are in the very early stages of the journey. I remember the issues that I was preoccupied with at a similar point in the journey, and what my mental perspective/knowledge base was at that time. Your perspective will change with time, circumstances, ongoing research, and reflection.

Don
We are older parents and Heather is our only child. She became so sick and debilitated that we thought that she was going to die, and everything looked so hopeless and bleak. However, God answered our prayers, and used the healing hands of Dr. J. at the Hansa Center to more than restore the health of our precious daughter. I have a moral obligation to help others that are likewise suffering!
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Traveler
Elite Member
Joined : May 2007
Posts : 36317
Posted 6/19/2013 4:55 PM (GMT -7)
Cal Cat -
The bulls eye rash is the skin form of Lyme disease - nothing else causes it, no matter what others say. The research is solid. Go ahead and place that "closed mind" tattoo on their forehead!

You really need to get your son to a LLMD that is willing to treat him based on his symptoms - the most knowledgeable LLMD's diagnose Lyme by symptoms, because the tests are not reliable. They hope that a positive Western Blot can be attained, but don't hold treatment waiting for it.
Lyme herbs used: "Chronic Tonic" from www.mistymeadows.org/wendydocs/Lyme Disease.pdf for 9 months

Bart herb - only Houttuynia for 6 months
tx ended 1-2013

Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV

Questions about what I've posted or just have questions? Please email me!!! Click on blue envelope under my screen name.
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California Cat
Regular Member
Joined : Feb 2013
Posts : 265
Posted 6/20/2013 1:09 PM (GMT -7)

Thank-you both. Yesterday the opthamologist confirmed what John told him a month ago - that he has lost the lower vision in his right eye.

Tomorrow he gets an MRI. They are at least taking this pretty seriously. Or, the quick appointment makes it seem that way.

However, no treatment suggested until the MRI has been seen. It is on my record that I believe it is Lyme despite the negative tests. The Opth. said it didn't look like Lyme, that Lyme has a distinctive look in the eye. Interesting. He also said he didn't see inflamation.

The basic problem I face with going outside insurance is that including credit line and income I can't cover a week at Hansa, or more than a handful of visits, tests and prescriptions locally. period.

I will apply for the help that's available and that may be a boost.  Because, starting treatment then stopping isn't ideal either. But, something is better than nothing, yes?

Waiting has been a constant emotional strain because I want to do what's best for my son. Still, eating has always been on the good list and sometimes it's that tight - food or something else. I lean towards food in that choice. This isn't 'Oh, shoot! No Bahamas!'.

There's a tiny chance the measurable eye test results will lead to positive steps on the hospital's part. Meanwhile I'll be booking that llmd too. Vision loss is pretty in-my-face hard to wait about.

Heather's Dad, the info you shared is very helpful. Any more symptoms you add I will keep my eyes open for. The value of awareness is unmeasurable. I can be pretty patient with the mental weirdnesses when I get where they come from.

Kiddo chooses this icon. scool !


Post Edited (California Cat) : 6/20/2013 2:20:25 PM (GMT-6)

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California Cat
Regular Member
Joined : Feb 2013
Posts : 265
Posted 6/20/2013 1:26 PM (GMT -7)
WorriedinVT, do you have any news you can share? I hope things are improving for you and your son. It's so hard seeing someone so young sick It's worse when drs deny treatment. I'd love to hear what I hope is good news.

Heartfelt wishes your way for all you need and the best of what you want.
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Traveler
Elite Member
Joined : May 2007
Posts : 36317
Posted 6/20/2013 1:44 PM (GMT -7)
Cal cat, Tell your 'kiddo' that we like that icon too!!

As for trying to afford all of this, try these links. I'm sure there will be a lot of repeats, but in order to be sure you have a chance to see all that I have, I included all of them:

m.facebook.com/story.php?story_fbid=496776497026802&id=327348653971656&__user=9415916

lymedisease.org/news/touchedbylyme/needy-meds.html

medicationcoupons.com/

www.internetdrugcoupons.com/

I hope that these can be of some help for you!! If there's more we can help you find, please don't hesitate to let us know!! Help with these infections comes in all shapes and sizes!! LOL!
Lyme herbs used: "Chronic Tonic" from www.mistymeadows.org/wendydocs/Lyme Disease.pdf for 9 months

Bart herb - only Houttuynia for 6 months
tx ended 1-2013

Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV

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